9:01 am-Physical Theropy: Phoebe is doing her Physical Therapy right now and she’s doing great! After this she gets a bath and I’ll update as soon as she’s done.

10:24 am-A Great Night: Phoebe (and her Mammaw and I) had a great night of sleep! It seems that her tremors are gone altogether, that her sodium is finally being regulated with her addvp shots and that she is able to actually sleep with her eyes closed and being still. This also makes for a much better night of sleep for those of us who are with her all night!
This morning Phoebe had close to an hour of Physical Therapy. She played bowling and had to roll the ball into the pins, walk over to the pins and squat down and pick them up with her left hand and set them back up on the platform and start all over again. She did this about four times and then went for a walk all around the ICU floor. All of the nurses and doctors stop and smile and cheer her on as she totters by. She was much faster today with her walking and her balance was stronger too. She isn’t really thrilled to be having to get up and get moving, but she did seem interested in getting out of her room and checking out the unit.

Now she has just finished up her bath and some sitting-up time in her special purple chair. A morning of exercise and a nice bath should be just the formula for a nice long nap very soon. Phoebe has been eating like a champ, thanks to the steroids that are keeping her brain swelling down. Her favorites so far are grapes, bananas, oatmeal and broccoli. I love seeing her eat because she has lost so much weight since the beginning of this ordeal and is so thin. I miss those sweet rolls on her arms and folds in her chubby little thighs. I also want to see her gain as much weight as possible before chemo starts.

We did not get to meet with the Oncology team yesterday so I expect that will happen today. The neurologist did come this morning to assess her and mentioned that we would likely be in ICU for another week until she is completely regulated on her ddavp shots and they see her sodium completely level out. We will continue to give her these shots when we leave the hospital and possibly forever this will be a part of her life. The shots will be given twice in a 24 hour period. This is much the same as someone who has regular diabetes and regulates with insulin shots. As her brain swelling completely abates, we might see an improvement in this area. Praying for that!

Phoebe looks great today and we are enjoying her. Thank you all for keeping up.

7:36 pm-Update Coming: Just wanted to let you all know that we had our meeting with the Oncologist today and it went well. We are about to head over to the Ronald McDonald house with the boys while Grammy and Grandad (Nathan’s Parents) will be staying the night with Phoebe. When I get the kiddos settled in to bed, I will post a detailed update on Phoebe’s treatment plan.

As for the Phoebster herself, she is doing great. Her sodium levels have been staying regulated with the new injections and she is eating like I haven’t seen her eat in a couple of months. They are unsure if her brain is signaling her body that it’s full when she eats, so we have to watch her intake. Today she has taken several very peaceful naps and enjoyed seeing her brothers. She even gave Daddy a belly laugh tonight which was so incredible to see after watching her go through so much the past 2 weeks.

It has been a good day. There is a lot of hope around here, and an abundance of peace. It almost makes me think there are people praying for us out there. *wink*

I will update more tonight. Thank you all for keeping us in your hearts as we go.

10:06 pm-Oncology Meeting: We met with the Oncologist today and came away with many of our questions answered. The first bit of news to know is that if Phoebe continues to do well tonight with her sodium levels we will be moved downstairs tomorrow. “Downstairs” means that we will be moved to either the Neurology floor or the Oncology floor depending on where they think she needs to go from here.

They are going to continue to observe her sodium levels and then they will do some pre-chemo testing so they can get baselines to operate from while she is in the midst of chemo. For instance, they will test her hearing right now so that they can test for any hearing loss during chemo. Mostly, they want her to continue to get healthy, eat, stabilize her mobility with physical therapy, get her moving, and get her ready for chemo-therapy. January 24th is the target date for starting chemo.

That leads me to our dilemma. We need somewhere to live nearby, and soon. We are hoping to rent a house for at least six months and then re-evaluate when we know what’s going on with Phoebe. The Ronald McDonald House is a wonderful place to stay, but only 5 people are allowed to a room and only 1 room is allowed per family. With Phoebe coming home with us, we will be too many to stay together and all that aside, there are only 2 double beds. So, we are looking for a house to rent either in Irving or somewhere else within a relatively close distance to the hospital.

This will allow us to have our boys nearby and not have to be separated during the 4 and 5 day chemo treatments each week. This will also allow my mother to come and help with the kids home schooling. It will afford us somewhat of a family life during this process and hopefully make the transition to our “new normal” better since we’ll be together as much as we can. Nathan will take some sabbatical time and is looking into serving when he’s able to with YWAM Dallas from time to time. His Spanish and love for kids would be a great asset to the ministry there.

The first 12 weeks and few months of this chemotherapy protocol will be extremely aggressive. Our Oncologist said that any time Phoebe has a fever during her treatment (which will happen) we must bring her in any time of day or night to start her on IV antibiotics because she will be immuno-compromised and at risk for a blood infection which can be deadly. He said it will be rough. He said we will want to quit. He said if we can make it through the first 12 weeks, things will get better.

This 12 weeks I dread like no other thing before in my life. To inflict pain and suffering on Phoebe is so counter-intuitive, so against every mother-fiber of my being…but the 50%…. So, we move forward.

We have had several suggestions, ideas and recommendations from others regarding the best path of treatment for Phoebe, and although we welcome those ideas, we feel a peace about where we are right now. We have the full support of our loving family and friends, they are nearby and able to help, and we have been impressed so far with the care and concern we have experienced here at Children’s Medical Center. We will stay here for Phoebe’s treatment.

So, this is what we know for now. Things may change, but for today, these are our thoughts and leanings and this is the new information. I can look back over the past several months and see how God has been preparing me for this in the gentle way that only He can, and I am grateful for that. We both sense His leading and also now understand the doors that were closed to us over the past several months that didn’t make sense at the time. Our times are in His hands, Phoebe’s times are in His hands and in that we rest.

I need prayer for “fear of the unknown”. The unknown is a scary place for me to hang out, so I am finding peace in staying 100% in the present, but fear tries to wiggle it’s way in at times and overwhelm me.

I just asked Nathan what he needs prayer for, and he said that I summed up exactly what he feels too, “fear of the unknown”.
Please pray for our boys. Being in between places without a house and a schedule and routine has been difficult. Please pray that they would be given grace and that God would minister to them in the areas we lack during this season.
Thank you all for the strength you are offering us, we need it.

1:24 pm-High Soium, Hanging On: Phoebe’s sodium just jumped from 146 to 165. They will be giving her a shot in her muscle of something called ddavp. This is the hormone that she would be sent home on if her Diabetes Insipidus continues, which they are thinking might now be the case. I noticed that she was getting distant and cloudy which usually precedes a big jump or a drop in sodium. In some small way I am thankful it is just her sodium and not the actual brain issue that causes her to be cloudy. Surprisingly, I slept peacefully, but the pain was immediate upon waking. I realize that I cannot think about what life was like just a month or two ago. I cannot go back and live in those memories of a healthy Phoebe. It will kill me. I also realize that I cannot live in time a month from now when we are in the thick of chemotherapy.

Phoebe and the Boys last year(2011)

There is too much fear there, too much unknown. I must stay RIGHT HERE, today, with Phoebe, moment by moment, face each hurdle as it comes, and smile at her and be strong so that she feels at ease. She is sleeping now, in the way that she sleeps..with a lot of movement, and for about 30 or 45 minutes at a time. She is not in pain, just weak and sleepy. We are loving reading all of the e-mails and notes and messages you all are sending. Never think they are a bother. Several have mentioned that they don’t want to bother us, but we have yet to be bothered by all the messages, love and support we have received. Your words are a lifeline. A verse of scripture that you send, or a thought about our situation, an admonition, a word spoken in due time..these are all so meaningful to us. Thank you for your continued prayers and outpouring of love. We will meet with the Oncology team this afternoon to talk about a treatment plan for Phoebe. Will update more on that later. All our love..

5:59 pm-We Feel Your Love: I read the guest-book here and am bowled over with gratitude. So many of you have re-posted Phoebe’s story, contacted your prayer networks and walked each day of this journey with us in prayer.

Some of you have posted our girl on your blog, sent her story to friends who contacted us with their own cancer success stories to encourage us, and sent out newsletters asking for prayer. Many of you have sent gift baskets, hospital survival-kits and books and toys for our children, others have given us meal cards for the hospital or gift cards to go out to eat. Our needs are being supplied, and more. So thank you, all of you, for the ways you are reaching out to our family. We feel your love. We feel upheld.

All of these things have enabled us to focus our energy and attention on Phoebe and our boys. The Ronald McDonald house continues to be a huge blessing for our family and we rotate nights with the boys between Nathan and myself. Both of our Moms rotate nights with us as well so we can always have two people staying the night with Phoebe.

Today has been another day of managing sodium levels and Phoebe has been pretty cloudy most of the day because her sodium was very high. She received a little cell phone toy tonight that she enjoyed for some time while she chewed on some ice and that was nice. Nathan is not feeling well, with a sore throat and coughing, so he couldn’t be around Phoebe today at all which made him sad. Please pray that he would get well quickly and it wouldn’t pass to the kids.

We are still waiting to meet with our Oncologist again tonight to discuss the chemo plan. I was expecting that it would be some time this afternoon, but we will update as we know more. We know that chemo will start sooner rather than later, that the first 12 weeks will be incredibly harsh and aggressive, and that the whole process will most likely last 18 months.

6:19 am-Please Pray: Her sodium rose to 151. Her fever is now 102.8. They put her back on the Vasso Pressin hormone at around midnight and we watched it do it a quick turn around. Too quick, because we are now down to 142, a 5 point descent since last hour. These fast descents are what have caused her last two seizures. They just ordered the Vasso Pressin stopped completely in hopes it will stop descending. The frustrating thing, is that I wanted to start increasing her fluids about an hour and a half earlier than they let us in hopes of slowing down the sodium rise to begin with, hoping we could prevent the use of Vasso Pressin altogether. I asked several times if we could do that, they said no. Then an hour later we were in crisis, starting back on Vasso Pressin to hurry up and get the number down. Then I called the NP in and asked if we could stop the Vasso Pressin since her numbers dropped 2 and 3 points per hour right away. She said no. Now we are in crisis, stopping the VP so she won’t swing down anymore so rapidly and be thrown into seizure. They asked me if I was a nurse because I knew the name of all of her medications and gave my input about what I thought needed to happen. It surprised me that they would not expect me to know the details of her case after being in the ICU with her for ten days. It does not help that we had an all new-to-us team of people tonight that had not seen Phoebe and were pretty unfamiliar with the moment by moment flux of her situation.

Phoebe has been hallucinating and is taxed by the fast flux in her sodium numbers. Her little body is just trying to keep up with it all. I really feel like it could have been managed with water only, had they let me give it to her earlier on to dilute the salt..but I know I can’t spend time being resentful. Phoebe just really needs your prayers this morning. Please pray for the Vasso Pressin to wear off quickly, for her sodium number to stay in a healthy range and not drop so quick as to throw her into a seizure. Thank you for standing with us.

6:45 am-145: Now at 145 after stopping the Vasso Pressin. This is THE number we would love to camp out on, so we want it STAY PUT! The NP just answered all of my questions very patiently and I appreciate that. Being the Mama is tough in these moments because my instinct tells me one thing, and their charts tell them another, and we have to meet somewhere in the middle. Praying for 145 to stick around for a while.

8:30 am-Sometimes, Momma Just Knows: The neurosurgeon just stopped by to visit and then met with the ICU team outside our door where I heard him reprimand them for putting her on the Vasso Pressin too soon and tell them that it should have been controlled with fluids instead. I won’t lie, it did feel nice to know that I was correct in my estimations. I talked with the new NP after that discussion and told him my frustrations with our situation last night and he assured me that he would get to know her case very well. So, the latest sodium level was 147 and I am giving her water in small increments to hopefully stabilize her. The neurosurgeon also said we could wash her hair! This is exciting, because Phoebe has the worst case of “bad hair day” you have ever seen. Her hair looks more like a nest. Keep praying for SODIUM STABILITY! Thank you!

12:24 pm-So Far So Good!: I am very pleased with how things are going today. They are allowing Phoebe to have any fluids and food she desires, so I am balancing out the salty vs. water dense foods and alternating between Gatorade and water. Her latest sodium level is 141, so she is moving up and down in the 140’s and doing great. She is alert, content, and even took a nap with Aimee Krol (my dear friend) for about 30 minutes.

If she continues on like this, it means that her body is finally regulating the sodium on it’s own and that we will most likely go home with a simple dietary plan rather than 2ce a day shots for Phoebe. I am feeling so hopeful with her progress today and praying this is IT! But then there is the part of me that knows better than to think we’ve solved all the issues. One hurdle at a time like Dr. Weprin said. That is what we will do. Today is it sodium, tomorrow it will be receiving the pathology report.

Today my good friends Aimee and Stephanie, and my mother in law will be with Phoebe for a couple of hours so Nathan and I can go to lunch. It seems we have hardly seen each other the last 11 days because we are trading shifts with our kids and often with other visitors. We have had people we have never even met, stopping by just to offer their support and that has been so neat. We have met many of your friends and family members who have just popped in and that has been so encouraging. Thank you all for sharing Phoebe’s story with your friends and loved ones. It amazes me to look at that visitor # at the top of this page each day.Praying for a good rest of the day and that those sodium levels will stay right where they are!

10:02 pm-Pathology: She has cancer. An aggressive cancerous tumor called AT/RT. It is very rare and there is a 50% survival rate with an 18 month long chemo regimen. They will do a minor surgery to put in a port for her to receive chemo treatments through before we leave the hospital and then she will have 12 very hard weeks of hard-hitting chemo. He warned us to be prepared. We just got this news tonight. The Oncology team will meet with us tomorrow to explain the details. We were not expecting this. At all. I will have more thoughts, and words to share with you all once this has sunk in. Right now I feel numb, and exhausted, and like I am living in a strange dream that is not my own life. Please pray for our sweet girl…and our dear boys as we look at what the next several months of our lives together will look like. One moment at a time..hanging on to Him.

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!