5:22 pm: Today was the most normal day I have experienced in the last 20 days. I woke up this morning in the same place as my husband and as the sun warmed it’s way through our window, one sleepy disheveled boy after another made his way into our warm bed. It was great. But I miss Phoebe at home.

Just before Christmas Nathan and I bought Phoebe her first little girl bedroom set off Craigslist and kept it in storage until we had a place to live. The other day when I went to our rent house for the first time, Phoebe’s little room took my breath away. As you can imagine, after having three boys in a row, a pink room full off ruffles with a bed canopy and baby dolls everywhere is almost magical. I can’t wait for her to see it for the first time. This morning Averic (7) said “Phoebe’s room is SO, SO frilly and girly!” with a hint of disgust. I said “I know, isn’t it great?!”

Phoebe takes a nap.

It doesn’t look like we’ll get the 2 days off at home with Phoebe before her first chemo treatment begins. Her sodium took so long to regulate and that has things running behind. They would like to get started as soon as all of her preliminary tests are complete. The AT/RT cancer that Phoebe has is very aggressive, so the sooner we get to killing it, the better.

I have received several e-mails inquiring about other more natural treatment options for Phoebe and if we have considered any of them. We are familiar with a few other more holistic cancer treatment options and as a rule, we generally fit into that mindset regarding many of our life choices. We water-birth babies au-naturale, we do not vaccinate, we eat on the healthy side and we’d rather do it ourselves when it comes to things like treating ailments or sickness. BUT…

Less than 40 children in the United States are diagnosed with AT/RT cancerous tumors each year. Just five years ago the Oncologists would have told us to take her home and enjoy her for the next 3 or 4 months until she passed because there was no chemo protocol aggressive enough to treat this cancer. We were in shock when the Oncologist told us that Phoebe’s baseball sized tumor most likely STARTED growing just THREE months ago. This is exactly what would happen again without chemotherapy. And not just any chemotherapy; this very intense, aggressive, hard-hitting 12 weeks that we are about to embark upon.

In other words, we do not have the luxury of time on our side, in seeing if a more holistic method would work. AT/RT is a nasty cancer and we have to fight dirty for lack of a better word. So, although my personal inclination is to gravitate toward a more holistic approach to fighting cancer, the protocol we are going to use with Phoebe is the only protocol thus far to have a 50% survival rate. If you read other protocol studies you will find a 10% survival rate or thereabout, but mostly you will find that AT/RT does not have a lot of research behind it because it is so rare and funding typically goes toward finding a cure for more prevalent cancers.

So, although we are not considering a “natural” approach to fighting the cancer itself, we are definitely looking into options for improving Phoebe’s over all health so that her body will be in the best shape to both withstand the strong chemotherapy drugs and fight the cancer. I appreciate all of you who have sent suggestions or recommendations and know that I have looked into some of these options for Phoebe.

Tonight Nathan’s parents are driving out to stay with the boys and help out for the weekend. Laundry and getting ready to start back to school on Monday are on the agenda. Nathan and I will work out a schedule for trading off teaching the boys and being at the hospital with Phoebe and we are all looking forward to getting back into a routine.

Phoebe is having a good night, eating lots of pretzels and oatmeal and fruit. Other than her pink-stained belly and her new port, you wouldn’t even know she’d had surgery today. She is very content. Phoebe can have visitors now that she is more stable, although there is a 50% chance she’ll be asleep if you come. Once chemo starts, her visiting will be very restricted since she will be immuno-compromised.

Thankful for a good day, hopeful for many more of those to come and SO blessed by the e-mails, messages, prayers and words of encouragement that have come our way.

7:03 pm: Quick update before we leave the hospital for the night. I am unable to post from the house yet as our wifi is not hooked up.

Today was a busy day for Phoebe. She had a night of decent sleep without terrible tummy pain for the first time in several days and that was nice. Her tummy girth has measured smaller today so I’m hoping this is a trend that continues.
Today she had her ECG test and hearing test to get a baseline for her chemotherapy so they can check those levels as she goes through her treatment. Tomorrow she will have surgery to place her port in her chest. Please pray she does well with the anesthesia and that the surgery goes well.

On Monday she will have another test called a Sisternogram to put dye into her spinal fluid and make sure that it travels to her brain and back again so that they know for certain that the chemo medicines will travel to the correct areas.

They are still watching her fever and have added Tylenol as an every four hour part of her work up so that we can stay on top of it. The 24th is still the tentative start date for chemotherapy providing that the Oncologist is pleased with her sodium situation and the fever is at least controlled. He is not opposed to waiting a few more days if that is not the case.

Mom is here tonight to stay with Miss Phoebe and Nathan and I will stay together with the boys for the first time in our new rent house. Praying tonight that Phoebe does well tomorrow in surgery. Today was a good day. Thank you all for continuing on the journey with us.

11:02 am: Phoebe tried to make an escape last night. She decided to climb out of her bed and thank God for shoulders because they saved her from hitting the floor. Mom woke up to Phoebe crying and hanging from her bed by her arms. Poor baby was all shaken up, but not hurt. I don’t blame her, I’m ready for some new scenery as well!

Her fever this morning was 103.2 which is frustrating. I can’t imagine this constant and fluctuating fever being her new normal. Jesus, please heal whatever is causing this fever. Heal her hypothallamus and reduce any remaining swelling.

Phoebe gets to take a walk in the hospital

Sodium is at 144 which is GREAT, We want it to STAY HERE! The endocrinologist stopped by this morning and was very pleased with how she is leveling out. They are still tweaking and watching to she how she does with the dosage and we are praying for that magic number that sets everything aright!

As I write this, a hoard of people we love are at our rent house unpacking our belongings and setting up house for us. I haven’t been there yet, but will visit this afternoon to see the house and hug a lot of necks. We are overwhelmed by the outpouring of love and support. You all have held us up in so many ways, and we love you for it.

Last night we were sitting at a little table in the playroom and Phoebe was coloring, her IV pole standing beside her putting saline into her veins as she played. I watched as two more children entered the playroom, their IV poles trailing behind them, the tell-tale hair loss a sign of the chemo-therapy drugs coursing through their bodies. I looked at Phoebe, with her thick, curly golden hair and was hit with the realization that we will soon join this special club of children fighting cancer.

I will be that Mom in the playroom in my pajamas who knows all the nurses and can talk chemo protocol with the doctors like one of their colleagues. Our journey will merge with the journeys of these families. We will learn the names of their children, we will know the origin of the dark circles under their eyes, we will exchange knowing glances in the corridors of this place. And God will be in all of it. We will find Him in these halls, see Him in these faces, know Him in this deep pool of hope mixed with hurt.

He is here for the taking, for the long nights of questions and the bone weary mornings when our strength fails. He is God With Us and He is. May His strength be made perfect in our weakness.

Thank you every one, for everything..

9:18pm-We Live In Dallas: What a strange day. We live in Dallas. Right in the heart of Dallas. We thought we would be getting our hands dirty in all sorts of agricultural projects, and now we live in a big city. There go the chickens…

I jest, but really today felt like I was walking around in someone else’s life. The furniture in the house was mine, and the house was great, but it sat on a corner lot in a neighborhood I have never seen in a town where I have no other reason for being except that my Phoebe is sick. A lot can change in 18 days, or just one.

The boys were in hog heaven running through the house playing tag. Ben was organizing his baseball cards, and Legos were being organized into their special containers. Averic and Deacon were excited about their new bunk-bed and I was awed by the home school room. It was nice to “land”. And so “new normal” begins.

Phoebe’s sodium is 142 and doing well. I am scared to say it out loud, but I *think* they just might possibly be on top of this sodium issue. Her heart rate is great when her sodium is level and that’s nice to see. Her tummy however is still still giving her a lot of trouble. She is just full of air and bloated and her breathing is so labored because of it. I hate seeing her like that and not being able to do anything for her. They took us down to x-ray tonight and took another one just to be completely certain that nothing was amiss, and it wasn’t. She is just full of painful gas and no one is certain why.

Phoebe has three tests tomorrow for her pre-chemo work up; EEG, Hearing test and echo cardiogram. I am praying that her tummy will just deflate tonight and that will be the end of it so she won’t be miserable during all of them. We have not seen Dr. Bowers, the oncologist yet since we have been on the floor. They have been trying to get all of these peripheral issues under control to get her prepped for chemo, but no word as of yet if the go-date is still the 24th. I know they want to see her sodium 100% leveled, her tummy pain subside and her fevers to abate, so we are just taking it one day at a time.

Please pray for good sleep tonight for Phoebe, that she would get relief from the tummy pain and of course that those annoying fevers would just stop already. Thank you all for your sweet guest-book posts of prayer and encouragement and affirmation.

Proverbs 25:11 – Like apples of gold in settings of silver Is a word spoken in right  circumstances.

5:02 am-Sodim 165/Blood Transfusion: It has not been a good night. They decided to go ahead and transfuse her since her heart rate did not stay at an acceptable rate after her stomach pain subsided. The transfusion went fine.

Phoebe’s sodium is 165 and for the first time it did not respond at all to her advvp shot, it actually jumped 10 points. They said the transfusion would not cause this. She has been delirious and hallucinating and had high fever throughout the night. The resident came in and seemed so unconcerned and flat about it all. Said we’d just give her some fluid and check her again in four hours. I said no, we need to check her sooner, that 4 hours was unacceptable since sodium is so high and she’s feverish and obviously hallucinating and not okay. He agreed to check it in an hour.

This is a different attitude towards her situation than we experienced in ICU and it concerns me a little. Please pray for her sodium and fever and hallucinating and the doctors. Thank you…

9:57pm: Amey’s laptop died in the middle of posting an update here. She asked me to do it for her. Here goes:

From Amey –

“I had a meeting with the endocrinologist today and feel much better about the plan for getting her sodium regulated.  It reached a high of 170 today but is now falling back and is at 156.  Her pituitary gland has completely quit producing the avp hormone so now they are tweaking her advvp shots and this is what was causing the glitch.

She got a lot of rest today since neither of us slept last night and she is better this evening.  I am so thankful  for the moving team that has united on our behalf and even though I haven’t seen the house we are moving into tomorrow I am looking forward to it. I am praying for a restful night for me, Mom and Phoebe.

I will post again when I have access to a computer.”

10:47 pm: My computer”s back in business, I had it plugged into a faulty outlet, oops! Well, I just wrote my second attempt at a detailed post of my thoughts about today and lost it in the cyber netherworld yet again, so I am calling it a night. Tomorrow is a big day and my one hour of sleep from last night is running out!

Phoebe is doing okay and I say just “okay” because we are still having fever and her sodium is still swinging. She did take a walk to the playroom tonight and did great with her balance. Her stamina is lacking understandably, but it was nice to see her at least take interest in the toys for a bit. I will post more about the play room and what I experienced there tomorrow.

Tomorrow is the day we move in to our rent house here in Dallas. I am so blessed by all the helpers we have coming to move furniture and get us settled in! I am so thankful not to have to do that alone in the midst of trying to take care of Phoebe and the boys. I look forward to seeing our house and having a place to call home finally!

Detailed updates and ponderings tomorrow. Thank you all for praying us through the last 24 hours, it was a bumpy one.

4:47 pm: Nathan and I enjoyed a night at the Ronald McDonald House with the boys while my Mom stayed with Phoebe last night. Her fever persists and they are still trying to figure out why. Her blood and urine cultures continue to be negative for infection and she seems healthy.

She has had a bloated tummy the past couple of days and they decided today to order chest x-rays and an abdominal sonogram this evening after she has fasted for three hours, just to be on the safe side. They are also consulting with the Infectious Disease team to see if the parasite Phoebe was treated for before she was diagnosed with her brain tumor might still be causing problems.

Taking a walk with mom and dad!

The ID team did not re-test her stool for parasite when we were admitted because they decided it was too close to the end of her anti-parasite medicine to get a good read. Since she seems to be having tummy trouble again, they have ordered a 3 day stool test to see if we can at least rule that out. I pray she does not still have that pesky parasite on top of everything else.

The situation with my boys is really grieving my heart today. I see them misbehaving and acting out and I know this has been difficult on them. They just need life to return to normal and I’m afraid it won’t be that for a long time. Meanwhile, I feel like we’re losing ground in areas where we have worked diligently with them up until all of this. It’s difficult to remain consistent when they are with a different person each day and the rules change from person to person. They went home with my Mom tonight and I think it will do them good to get out of the hospital and our little room at Ronald McDonald house and run free in the country.

We found a house to rent and are hoping to move in on Wednesday. Nathan sent our pathology reports to his Uncle in Germany who is a pediatric cancer researcher and we look forward to hearing his insight into Phoebe’s case. He spent a large portion of this afternoon doing paperwork and getting things organized for our move. We did not ever imagine ourselves living in the heart of Dallas, that’s for sure. We thought we were on our way to an agricultural life. Never has our life course changed so drastically and so quickly in our married life together. It’s been quite the tailspin!

But we are thankful, things are falling in to place and we have had so many people willing to help, to be here in an instant if we need them and offer their services or talents to bless us…it’s been incredible. Thank you to all of you who have reached out to us in prayer or by ministering to our immediate practical needs. The body of Christ is beautiful in action!

This week we need to see Phoebe’s fever abate. Her sodium needs to be totally 100% regulated into a predictable pattern, and her tummy troubles need to resolve. We can not move forward with her treatment until her body is ready. Please pray for all of these things.

She is not feeling well right now with her tummy issues and has been sleeping quite a bit so we are trying to keep visitors to a minimum this week so that she can get healthy for the start of chemo next week. If she feels better, we’ll let you know.

8:44 pm-Prayer: Please pray for Phoebe, her hemoglobin is at a 7 (healthy is 12) and this is contributing to her high heart rate (200, supposed to be about 100-110). They are going to give her a blood transfusion to regulate her hemoglobin. Her intense abdominal pain is the other contributing factor. She is crying out and just very miserable. It might be a long night. Asking for prayer for these things.

10:13 pm-Prayers Answered: I feel like I just watched all of our prayers get answered in a matter of about 30 minutes from the time I posted asking for prayer! Phoebe’s tummy got soft and let go of a lot of air that was blocking up her intestines and her heart rate went from over 200 to 120 and she is sound asleep!! Thank you all for going boldly to the throne on Phoebe’s behalf, that was awesome. The blood transfusion is on hold since her heart rate is so good!!

9:34am-Today: Today Nathan and I are meeting with a couple who has a little boy that is a survivor of AT/RT cancer and was treated with chemotherapy here at Children’s Medical Center Dalllas by our Oncology team. I am looking forward to asking a zillion questions, finding out what to expect and hearing their story. The success stories for this type of childhood cancer are difficult to find, and I am looking to be encouraged by our meeting today.

I spent a few hours yesterday educating myself about chemotherapy and learning a new vocabulary with which to discuss things with our Oncologist. I studied various chemo protocols, statistics and outcomes, adverse side effects, and the different approaches taken by different hospitals. I about drove myself crazy because there are many options out there for cancer treatment and I obviously am not well informed about any of them other than my recent research.

I read quite a bit about the Dana Farber protocol that the Oncology team here will use and it did have THE best results out of any other documented chemo protocol for AT/RT. That of course gave me some peace of mind and made me feel like we are in the best place for Phoebe although I still completely dread this process.

They told us that we might be moved to the endocrine floor first before being sent down to Oncology so that they can finish tweaking Phoebe’s advvp dosage to the exact amount, so we’ll see.

My sleep the last couple of nights has not been very good. I am stressed out in my dreams over Phoebe and her care, although I can’t ever recall specifics when I wake up. Please pray for me regarding that.

Nathan looked at a few houses last night and will see a few more today and probably make a decision so we can get moved in. Only 9 more days until chemo begins and we’d like to be moved in and have the boys set up and home school organized and ready to go so we can get back on a more normal track. We will need helpers from Lindale for that most likely and will let you know more when we find a house and have a move-in date.

Thank you for your prayers, it amazes me to see people from France, Nigeria, Australia, and other far away places leave comments on Phoebe’s Guest book. We appreciate you all and thank you from the bottom of our hearts for bringing our girl before His throne.

9:36pm-Oncology Floor: Phoebe is settling in to her new room on the Oncology floor. We now have our own private bathroom and are able to have food in the room. The ICU was nice, but the Oncology floor is more family-friendly with it’s own kitchen, fridge, coffee maker, play room, DVD and toy closet.

Honestly, I was caught off guard by the emotional response I had as we explored the Oncology Unit. The ICU felt like a place to come and stay for a short time and be discharged when you were on the mend. The Oncology floor feels like a place to live, a place to stay, a place to settle in. I never expected when we stepped foot in the ER two weeks ago that we would stay for ANY reason. I never imagined this hospital or any hospital becoming a place to set up camp, a place to go for “treatments”. *sigh…

We had a nice meeting this morning with Jeff and Stacie, the parents of Gavin, who is an AT/RT Cancer survivor. They gave us some great advice, told us specific questions to ask and were very informative about different resources that were available to us. It was nice to sit down with others who have been down this road. It gives us hope for our own journey.
Phoebe had a lot of visitors today from both sides of my family and everyone arrived just in time to see her make her way downstairs in the hospital. She walked all the way to the trains and then came and shared my lunch with me in a sitting area. It was a sight to behold her in her little polka dot dress (thank you Rovenstine family) and her brown Mary Jane shoes. After we wore her out she took a nice long nap and Grammy and I joined her.

Nathan had some success today looking at houses for rent and put in an application for one of them. The landlady knows our situation and is willing to allow us to rent month by month as needed for Phoebe rather than a full year contract which is wonderful. We know that the first few months will be extremely intense, after that, we are not really sure what to expect. Phoebe’s Mammaw (my Mom) is staying at the hospital with her tonight and I am here at Ronald McDonald House with all my boys, looking forward to a good night of sleep. This week we are still focused on getting Phoebe’s advvp shots to the right dosage to regulate her sodium and getting her healthy and strong and ready for chemotherapy treatments that start on the 24th.

She has had some tummy trouble and uncomfortable bloating and needs prayer for that and also that her fevers would go away. Thank you all for praying. It looks like we are on to the next leg of our journey on the Oncology floor.
Goodnight, ~ Amey

11:48 am-Phoebe Lu: Phoebe Lu is doing well this morning. She had some head and eye pain last night and was given Loritab which always makes her a little silly, so Grammy and Grandad enjoyed that. She also looked a little pale this morning so they ordered blood tests which came back normal.

Phoebe and the new baby goats (2011)

They are now trying to completely rule out any possibility of infection that might be causing her fever so that they can officially diagnose that her fever is residual from the brain surgery. If that is the case, they expect it to correct with time. She is having more extensive blood testing and possibly a lumbar puncture to rule out infection.

Please pray that she would be infection-free, that we can skip the lumbar puncture and that her brain would heal in the area that regulates her body temperature.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

We are most likely going to be moved to the 6th floor this afternoon. We will then be in the care of the Oncologist, Dr. Bowers, whom we really like so far. And from what I hear, the 6th floor is the fanciest, roomiest place in the hospital. It will become like a 2nd home to us for this season and we will get to meet other families and children in our shoes. I look forward to, and dread that at the same time.

Benjamin and his Pappaw are in Lindale today so that Ben could play basketball with his Upward Bound team at church. I think this will become a Saturday tradition and both Ben and Pappaw really enjoy their special time together.

Averic and Deacon are tearing up the playground at the Ronald McDonald House and Nathan is searching for houses. We are thankful for the offers we have received so far and are looking into all of our options. I will update more this afternoon after our move to Oncology.

4:38 pm-One More Night In the ICU: It looks like we’ll be staying another night in the ICU. From what I understand, the Oncology team wants her sodium levels and DDAVP medicine functioning at 100% every 12 hours before we move floors. She has been doing great, but they are still tweaking her dosage to get it EXACTLY where it needs to be in order for her body to need it only every 12 hours. I will be taught how to administer her shots in her leg/buttocks and/or arms before too long. They are pretty quick so I don’t think I’ll have an issue with it.

We have had a nice afternoon with Phoebe. We put her jammies on and went for a stroll around the ICU. She looks so good wearing clothes and shoes and walking. It makes me wish we could just pack up and leave and go do life. After her walk, I held her in the rocking chair for about an hour just enjoying the feel of her in my arms. I am being purposeful about taking these moments in. I smell her, memorize the curve of her cheek, brush her bangs from her eyes and soak her in.
Behold, children are a gift of the LORD, The fruit of the womb is a  reward.          Psalm 127:3

Phoebe is a precious gift. All of my children are. I hold them a little closer now and I realize more than ever before that they belong to the Lord. I am privileged that He has given them to me for a season and I purpose to enjoy each day with them.
Ultimately, everything I “have” is His..it is BY Him and THROUGH Him that I am anything. And that makes it easy to know that He is in control and can be trusted. He redeemed me from the pit when I was a lost 21 year old girl, and He set my feet upon this path, and He has been so good to me. He has loved me fiercely, and redeemed me wholeheartedly and lavished me with His abundance. Who am I to balk at His design for my family? He is worthy of it all. May the lamb that was slain receive the just reward of His suffering and may my family be a small part of that.

Thank you Jesus..

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.