9:42 am: This very moment I am watching Phoebe with her physical therapist. The left side of her body is weaker than the right because of the incision they made through the area of the brain that sends signals back and forth between the left and the ride sides. Right now they have her sitting up on the edge of the bed and she is encouraged to pick toys out of a bucket on her left and hand them to her brother Deacon. She is doing great, just a bit wobbly and you can tell her body wants to lean to the left. Now they have her standing, fully supported, but trying to put one foot in front of another. She is able to do this because her SODIUM IS AT 140, and her EVD tube (that drains her Cerebral-spinal fluid) was taken out this morning! She still hasn’t had a real sleep, and since she is being given so many steroids to reduce brain swelling, they are not concerned because this is typical of that. But she is over-tired nonetheless.

Phoebe and daddy on vacation at PuertaVallarta (2010)

I got several hours of sleep last night at Ronald McDonald House and had lots of boy snuggles in bed this morning before we came to the hospital and that was wonderful! This afternoon the Occupational Therapist will come to work with her on eye tracking and motor skills etc. So, it seems that we are in a much different situation than we were just yesterday. What a difference a day can make! Thank you all for your ceaseless prayers for Phoebe, we are reaping the benefits of them each day. Today, we ask for prayer that her left side would strengthen, that her brain would do what it needs to do on it’s own without the EVD tube, and that her sodium level stays consistent. She is still limited in her fluids until her sodium has been stable for a length of time, and she is very thirsty. Today is a good day!

4:40 pm-It Peeled Away: Phoebe is doing well. Her sodium is 137 and moving up very gradually which is exactly what it is suppose to do so thank you for all those prayers! She is deliriously tired though, sometimes to the point of hallucinating, so please pray this little girl will get some sleep. Now that her sodium and fluids are more regulated they are considering giving her a sedative to help her sleep later tonight, but it would still be best if she fell asleep on her own. The really incredible news, is that when our neurosurgeon met with us, he described the tumor during surgery as “PEELING AWAY” from the brain. Now if you have read our earlier posts about several people getting the words for the tumor to “fall away” in prayer as they prayed for the surgery, you will understand the significance of that statement. It was a goose-bump moment for sure! Thanking God for a good surgery report!

Right now Phoebe’s temperature is 102.3 and it needs to come down. Since surgery Phoebe has sustained a fever daily and we need to see that resolve. She has been tested several times through blood cultures to see if there is infection and so far all tests have come back negative. It is possible that she could still have residual blood in her cerebral spinal fluid that could be causing fever which will resolve with time. Praying for a good night of sleep for Phoebe..tomorrow we have another big day of Physical Therapy and OC. Thank you for continuing to pray us through.

8:28 pm-141: Sodium at 141! She’s doing great on the slow rise for the sodium levels but is a bit dehydrated because her fluids have been limited. She still has a fever of 102.3 that needs to come down. The pathology report for her tumor comes back on Thursday and then we will now the game plan for her treatment. Please pray for a good report!! I know the posts today have been limited, most of my time has been spent enjoying my girl who is talking, (even trying to walk!) singing, awake, and not in any imminent danger. It has been a lovely day around here!

11:32 pm-The Pendulum Swing: We are at 148 for sodium. She spiked 6 points in the last 2 hours and that is too fast. The sodium needs to STAY PUT and level out. She has a fever of 102.7 that isn’t letting go and if her sodium keeps rising she will slip again into Diabetes Insipidus. If that happens, they will have to put in another IV (since they took them all out today) and restart her on the Vasso Pressin hormone. Please pray for it to stop!

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..

12:17 am: She still hasn’t had a real sleep since she came out of anesthesia yesterday. It’s half past midnight and she is restless and a bit delirious. Going to ask about the pituitary gland/adrenaline link tomorrow and see what we might be dealing with. The good news is that her sodium levels are maintaining well even with all the food she ate tonight. The roller coaster wears me out…up and down, up and down. Needing to see her sleep…and needing to sleep too 🙂

8:40am-Prayer Points: There was not much sleep to be had last night. Phoebe’s sodium levels made a huge dip from the healthy 145 down to 130 which is just 3 points higher than when she seized at 133. They took her off of food and liquids again and are closely regulating her fluids. The problem has been sodium too high, now we are shifting in to sodium too low. They said this can go on for a week or 3..it depends on the child, but this is how it goes after neurosurgery. She did not sleep last night and called her Grammy “Daddy” all night. The sleeplessness is not alarming to the staff here, but it really worries me. It only seems right that one would need to really sleep after such traumatic surgery. They confirmed that the pituitary gland is just trying to regulate things and these swings are normal. It’s so difficult for me not to go up and down with the swings emotionally and maintain an even keel, but yo-yo’ing won’t do either of us any good, and my nerves are already frazzled.

The left side of her body is a little more stiff than the rest and although they said it was mild and would loosen up with brain healing, I shared my concern with the doctor about her pointing left foot and her resistance to bending that knee. So she is sending a physical therapist by today to see her and show us some exercises to do with her until she can get up and walk. They mentioned that she would most likely have to have some Physical Therapy to help the brain and body get back in synch in some of these areas again. Her ankle still bends back and her knee still bends, it’s just stiff and resistant.So, today feels like a 2 steps forward, 1 step back kind of day. Her fever is also hovering around 100.5 and we need that to go down. Thanks for standing with us.

1:54 pm-Critical Hour: Please lift up our girl right now. Her sodium level is at 125 and her lucidity is slipping away as her levels dip so low. Her sodium needs to slowly climb back to it’s proper level at 145. She has until 2:30 to go up a point and show that her level is improving. If it is not improving they will try a new drug that is suppose to help her body dump fluids and better concentrate her sodium level in her body. Sodium this low is seizure territory and we do not want to go there again. Things are touch and go right now and we are reaching out to all of you to hold her up right now. Praying I have a good report to share soon.

2:50pm-Holy, Holy, Holy: Playing Hillsong, “Holy, Holy. Holy in Phoebe’s room, holding her hands and looking into her eyes praying for sodium. Sweet girl, shows herself every few minutes, feels like we are calling her back to us, standing in the gap….

4:12pm-Update: Her sodium level went back down to 125 but the dr. has decided to hold off on the medicine and wait to see if Phoebe will regulate herself. If she goes below 125 we will look at giving her the medicine to drop the fluids from her body and try to bring her sodium up. Thank you all for your prayers and guestbook encouragement. She just got some Tylenol and smiled for us.

7:13pm-Calling For Prayer NOW! Phoebe is having a seizure…Pray

8:45pm-Seizure #2: I had just finished showering at the Ronald McDonald house when Mom called to tell me to come right away. So thankful to be literally 3 minutes away from the hospital. She had a shorter seizure than last time and she has maintained breathing on her own so far. We are waiting for her to wake up, but it might be a while given the medicine she was administered and the after-shock of the seizure. Thank you all for praying. I don’t think my nerves have ever been so shot in all of my life…the intensity of each moment today was overwhelming, and yet there is an underlying peace that I recognize as God’sgrace and the feeling of being upllifted by all your prayers. Praying for an uneventful night..

9:26 am: I woke up to a beautiful sight this morning, my sweet 4 yr old, Deacon snuggled up in bed next to me. I had breakfast with my boys and then arrived at the hospital to find another beautiful sight, my Phoebe, awake and looking into my eyes mouthing “Mama” and mouthing the words to “Holy Holy Holy”, her favorite hymn, as I sang to her. She is crossing and uncrossing her legs, watching TV, yawning, squeezing my hand and being the sweet little munchkin she is. They are just waiting for the doctors to do their rounds and approve Phoebe for the tube removal. Then we will get to hear that sweet little voice and watch her enjoy eating and drinking by mouth again. Life really becomes all about the little things in this situation. Just to see her mouth a word and recognize me, shot a big burst of joy straight to my heart and took my breath away. They are all surprised that she is not fighting the tube and complaining, and I know it’s because thousands of you have prayed for peace and comfort for her during this process.

She is SO peaceful, her tremors have turned to tiny shivers every now and then and seem to be resolving. We were given a different report today about her Diabetes Insipidus than yesterday, and I’m not sure why that is, but today we were told that she will have to have her hormones regulated at least a little bit throughout her life because although the pituitary gland was not damaged during surgery, the remaining tumor cells on the surface will effect her hormone regulation to a degree. Her sodium levels are now under control and they have found the right “formula” for her body in that regard. It looks like we will have to give Vasopressin injections on our own to maintain that after she leaves the hospital. In light of everything else, that seems VERY doable! I’ll take it! The prayer request today is that the tube removal would go well and that she will rally and do all that breathing on her own. She is breathing mostly on her own right now with only supplemental help from the ventilator if she gets lazy. They said that her brain will not hurt, only the incision site, but not much and that the drainage tube in her head will most likely be removed before the weekend is over. When that tube gets removed we can hold her! I can’t wait to just hold her!! Also, she is still maintaining a little fever of 100.3 to 100.9, so please pray that that will go down to normal. Thank you everyone, we are feeling so full of hope today!

10:51 am-Tube Out!: They just took the tube out and her first word was “Hi!” 🙂 The NP then said “thank you” for allowing her to place the oxygen tube across her nose and Phoebe said “you’re welcome.” She is fully here, super sweet, and looks very relieved to be free of the breathing tube. They will monitor her for the next hour to make sure her breathing is stable. Thank you all for praying!

Our precious Phoebe has only slept 20 minutes and they really want her to sleep. The Dr’s have said that she can have no more visitors today except the person who’s going to cuddle with Phoebe.. And that is her Mama! Please pray that our little Angel sleeps for a good period of time.

7:42 pm-Saturday Evening Update: It has been a wonderful day, spending time with Phoebe awake and enjoying her little personality. She has had some difficulty getting into a good deep sleep. She seems to be caught somewhere between sleep and wakefulness and talks a lot and moves her arms and pulls at her tubes. Apparently this is not uncommon in people who stay in an ICU setting for several days where night and day seem to have no differentiation. She was also sedated all of yesterday and last night so her wakefulness is not totally surprising. Nonetheless, the drs want to see Phoebe sleep WELL on her own and cut off visitation today in order to try to help facilitate that. She was peaceful for most of the day and content to lie in bed and play with her new toys (thank you Jenn, Shelly and Dawn) and look at her new books. She is still mis-firing in cartain areas which I am told is normal while the brain heals. For instance, she will call a nurse “Grammy” or say “stop Deacon!” when Deacon is not here or she will try to bite the tubing on her arms thinking it’s food. Poor baby has been starving all day and they have held off until her sodium levels could balance.

Her sodium has been at 147 (perfect is 145) all day so she is FINALLY regulating! And because of that, Phoebe is about to get some oatmeal, a banana and some grapes and Gatorade. She has been dreaming about cookies and chocolate and has asked for turkey and waffles, but it might be a while before she graduates to those! I am hoping that a full tummy will help her sleep. Eating will be a test to see how her sodium reacts, so please pray that she stays stable. Nathan’s Mom and myself are on Phoebe Duty tonight and Nathan and his Dad took the boys to see the “Tin Tin” movie. Please pray for grace for the boys, they aren’t great at verbalizing their feelings at their ages, but it is obvious that they have had a difficult time with all the sudden change. I’m glad they’re having a fun boys night tonight. Thanks everyone for your prayers, we are truly uplifted.

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.

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

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!

8:30am: We had a busy night, but managed to get a few hours of sleep. There were more blood tests and she got a bath and had her hair washed with a special solution. She wasn’t thrilled about a 4 am bath time, but was a trooper anyway. At 5:30 am they finally let her get a good sleep and she slept hard, slack-jawed and completely still. They came to get her around 7 am and we got to walk with them down to the OR. They gave her a sedative while we were saying goodbye and she got very woozy and sweet. She was perfectly content and we felt very at peace. We spent a few minutes in the hospital chapel praying and crying and entrusting her to THE ONE who formed her in the secret place. Now we are together with our friends and family in the waiting room. Please continue to pray..we appreciate you all so much.

First Update, 10:45am: They called to let us know that her central line is in and surgery began about an hour ago. Just now got the call that they are in the brain and are starting the tumor removal.

Phoebe a couple of months before her diagnosis.

Second Surgery Update, Noon: Just got the hourly call from the OR. They reported that Phoebe is doing great and they are still working on the tumor. There is a beautiful atmosphere of prayer and hope in this waiting room and we are surrounded by those we love. Our dear friend Katherine Ewing, has been here since 6:30 am interceding in Phoebe’s room, she has committed to stand until Phoebe is out of surgery and doing well. This morning as I was praying over Phoebe, the Holy Spirit put the words “fall away, fall away, fall away” in my mouth. I just spoke to the tumor and my prayer was that it would fall away. An hour later I received a message from my friend Robin Osteen that the Holy Spirit had placed it on her heart to pray that the tumor would just “fall away”, and that that was what she was praying out over Phoebe. Just now, one of DeDe’s friends texted her and said that the words “fall away” keep coming to her mind as she prays about Phoebe’s tumor surgery. God is on the move, putting prayers in the mouths of the saints. Thank you Jesus for total involvement in all of our cares. I stand amazed…Third Update, 1:45pm: Phoebe is still doing great. They said they might be done in just an hour, so we are praying that that means the surgery was more simple than they anticipated.

Finishing up, 2:15pm: The neurosurgeon is finishing up and will be calling us soon to consult with us about the surgery. Phoebe will still be in the OR for an hour while they get her cleaned up and then she will be brought back to her room in the ICU.

From Summer:  I have taken over the post as Amey and Nathan were just called back to speak with the doctor. Please continue praying that he will deliver great news!

Amey will have more details later but here’s the gist of it:
The surgeon feels that it went very well. The tumor was very vascular so Phoebe did need a blood transfusion but she is doing really well.  They got the vast majority of the tumor out and the biopsy results could be in as early as next Thursday or as late as two weeks from now. The surgeon did say that she should feel better immediately. Amey and Nathan are in there with her now.  Thank you so much for all of the amazing messages and prayers! Please keep them coming!

Pray for fever to break: Phoebe is having a hard time and we need prayer for her fever. It is 103.5. They have given her Motrin and are about to give her an ice bath. Please pray for her fever to break and she feel relief.

Amey’s Post Op Update: I think we expected to hear that the tumor had completely “fallen away” when the surgeon came to speak with us. The news was good, but I wanted it to be GREAT. They were a bit surprised at how vascular the tumor was, and indeed the EXACT prayer that we still need to be praying is that the tumor will FALL AWAY! The surgeon was pleased with how the surgery went, but did warn us that sometimes there are “microscopic fingers” of tumor tissue that cannot be discerned from healthy brain tissue.Those “fingers” are what need to fall away. He prepared us for the possibility of a malignant diagnosis with the tissue since it was so vascular and told us that chemotherapy in pill form or otherwise, would most likely be the next step. We were not given a “go home” date, and expect that much of that will be dependent on how Phoebe does tonight and tomorrow. Right now she is singing with her Grandmothers, lying on a cold blanket filled with ice water and covered with wet rags. We need to see this 104 temp come down. She is alert and totally herself and that is great to see. Right now we are taking it moment by moment because that is all we can handle. God has upheld us today, used the body of Christ to minister to us, and been faithful to bring our Phoebe through a big procedure. Thanks you all for your words and prayers and encouragement. I will update frequently as we ride out the next days and weeks and months. We thank you, and Phoebe Lucille thanks you..from the bottom of our hearts.

Fever Gone: Thank you for praying! Phoebe’s fever broke. The doctor said that the tumor put pressure on the pituitary gland that controls the body temperature. With that pressure gone, her body will be out of wack for a while. She is calm and happy now. Tomorrow she will have an MRI to see what is left of the tumor in her brain.

Finally, a moment to sit down and breathe. Phoebe is tucked in to bed after a long day of laxatives and seeing various specialists. I pray she can just sleep tonight without too much interruption, poking and prodding. Tomorrow is a big day. Things have been so hectic and I just need a few moments with my girl. I look forward to sleeping next to her tonight and just soaking her in.

Phoebe a few months before her diagnosis

The surgery process will begin tomorrow around 7:30am. First, an hour or so of anesthesia prep and then 5-10 hours of surgery with hourly updates. Today has been about prepping her body for surgery and much attention has been paid to getting her electrolytes balanced and getting her system cleaned out. We have seen several specialists since this tumor touches a few different brain centers. We have met with an Oncologist, an Ophthalmologist, and an Endocrinologist as well as the infectious disease doctors. We learned that whenever there is a brain tumor, benign or malignant, Oncologists are involved in the process. We will not know until tomorrow if this tumor is cancerous. Our neurologist explained to us that the TYPE of tumor it is, rather than IF it is cancerous or not, is the more important issue. He explained that one could have a cancerous tumor that was very easy to remove and would not cause further concern in the future, and that one could have a benign tumor embedded in some very serious parts of the brain that would cause several serious issues, so “cancer or not” is not the real question. To a degree, this was comforting to hear and we were even more comforted when he told us that it appears that Phoebe’s tumor has grown primarily in the open areas of her brain. He is of course guardedly optimistic when he shares with us, balancing our hope and the reality of the situation very well.

The tumor sits and seems to have it’s root on the optic nerve center, so a portion of the mass will be left there as it is too risky to cut so close. The remaining areas of tumor left after surgery will most likely be shrunk with a pill-form of chemotherapy. If there is an aggressive cancer, a more aggressive chemo regimen will be instated. We have not discussed those details in depth though, because until the biopsy of the mass, these are all just projections. We will have more answers tomorrow. The infectious disease docs were brought in to discuss the history of the parasite situation and they decided that for now they would wait to re-test her stool until more time has passed since the completion of her anti-parasite meds. They are not concerned that it is an issue right now.

The Ophthalmologist dilated and evaluated her sight and confirmed that her optic nerves were inflamed and the Endocrinologists are keeping an eye on her for the possibility of a certain type of situational diabetes related to the tumor’s pressure on the pituitary gland. So, we have several things at play here and we are praying for the most simple outcome.

Please pray for Phoebe’s electrolytes, that they would balance out and be in the right place for surgery. Please pray that the tumor would fall away easily from the brain centers that it is touching. Please pray that the tumor would be benign. Please pray for our neurosurgeons and their team and that Phoebe would sail through surgery without complications. And please pray for her 3 big brothers who are being shuffled between family and friends right now, that they would be given grace during this time.

We have been so amazed, brought to tears, overflowing with gratitude, for the report that thousands are praying for our sweet girl during this time. Seeing the Saints of God respond and unite like an army for our daughter has been so precious to us. We thank you, each and every one.

Because He lives, Amey …Phoebe’s Mama