Thank you all for your guest-book posts. I read them and cry and feel uplifted and fought for, it’s awesome.

Her Creatinine #’s are lower than they were yesterday which is a good sign. Based on her input/output the doctor thinks her hydration is good. Her vitals look good as well, however, Phoebe continues to be very nauseous and is having a very difficult time keeping anything down. She also is extremely ‘out of it’ and sleeping around the clock in between short periods of being half awake. They are not happy with this, and want to see her more lucid and being able to interact well.

The doctor thinks we are dealing with an infection she is fighting off, which would not be surprising with the illness we had at home last week. As diligent as we were, I’m sure it’s impossible to keep ourselves completely germ free.

They also acknowledged that she just had a particularly harsh round of chemotherapy and that, combined with an infection, combined with blood counts dropping makes for an intense situation in her body. Dr. Bowers was right when he told us that we will feel like quitting at the end of this 12 weeks. I can’t imagine, so I won’t. I’ll just stay here in the present. When I start to think about her going through 17 more months of chemo it is overwhelming.

Tonight her Daddy is with her and I’m glad for both of them, I think they both needed some time together. I had a nice school day with the boys and spent some time planning out the next several weeks of lesson plans. Doing normal things is therapeutic..mopping, doing laundry, everyday drudgery is a welcome respite from the intensity of the hospital right now. Tonight I will enjoy a quiet evening at home with the boys and pray fervently for my girl who seems so down.

I am so thankful for those of you who have stocked our freezer with homemade meals. I can’t imagine mustering up the energy to do much more than put a frozen pizza in the oven right now!

Thank you all for standing in the gap for our family and our Phoebe.

7:57 pm:

Phoebe’s Creatinine #’s are still the same and they are hoping to see them come down tomorrow after she has had some time to absorb all of the extra fluids she is being given. When the numbers come down they will know that she was just dehydrated to the point that it effected her kidney function. If the numbers are not changing then they will look more at the possibility of kidney damage. If there is kidney damage, it could be temporary or permanent, there are several unknowns right now.

She continues to be very groggy, zoning out here and there and incredibly overcome with sleepiness. She is also very emotional. I think tonight is the first time I have seen her cry simply out of sadness and for no other reason than she just felt sad and tired and worn out from it all. It was a very different type of cry than when something hurts or is uncomfortable. All I could do was climb into bed with her and hold her. She put her little noggin on my shoulder and just cried and cried, which in turn made me cry.

We will have to wait another day or two to find out if her blood cultures come back positive for infection. She has been fever free for most of the day and that’s a good sign. Her sodium is at 150 and they are trying to bring her down slowly once more. It is amazing how her tummy deflates when her sodium levels are good, and how instantaneously it gets hard and distended when her sodium levels are high. No one here has seen a patient present that way with high sodium levels, apparently it is very atypical.

It was a roller-coaster kind of day and I expect the next week or so will be much the same as her blood counts drop. Please pray that Phoebe’s body will have the strength needed to fight the cancer and maintain healthy function of all other organs. Also, please pray for her little spirit and her morale which seems to be pretty low right now. She is feeling down and needs a lift.

Thank you all for continuing on in this fight with us!

12 noon:

Please pray for Phoebe. The Dr. is not pleased with her sleeping and drowsiness. Her Creatinine level has gone up which could be related to kidney damage as a side effect of the toxicity of the chemo. They are also concerned she might be fighting off an infection. Her sodium jumped back up to 155 and they are increasing her fluids to rehydrate her. He said we will not be going home as we thought we might because they have to keep a close eye on her now. Thank you.

7:58 pm:

I am with my sleeping beauty now. Phoebe has been on a sleep binge since her 2nd day of in-patient chemo. Her body is taxed and tired and I am glad to see her rest. The EXCELLENT news, is that her second lumbar puncture tested negative again for cancer cells!!

Shortly after I got here today it was time to de-access her port. Every 7 days they remove the needle that plugs in to her internal port to clean the area and replace it with a fresh needle. I love these times because at least for a little while, she is completely unplugged from any tubes or lines. I gave her a short bath because she was groggy and kept tilting back in the tub, but it was nice to get her all clean. Since she is too weak and foggy right now to walk, I took a stroll around the floor with her in my arms. It feels so good to hold her in my arms and walk without pulling a pole or worrying about her lines, such a simple thing I took for granted when Phoebe was healthy.

As I stood in line at the pharmacy the other day with my 3 boys, a woman in her fifties looked them over and smiled. “You have your hands full” she said ,”Yes, I do, and they have a 2 year old sister as well” I replied. “Three boys, I had three boys” she said, reminiscing and then she teared up right before me, “oh, it goes so fast, it seems just like yesterday my boys were their ages”. I wanted to say, “Believe me, I’m not taking these boys for granted, their sister is in the hospital with cancer”, but I didn’t. As the boys skipped, zig-zagged and hopped back to the car, my heart overflowed. I’m not sure there’s anything better than being a Mom. I want to squeeze every ounce of joy and appreciation out of these days while I have them. I am all too aware that life can change in an instant.

Without Phoebe at home I have noticed that Deacon feels so much younger  to me. He is now “the baby” in the family dynamic when we are away from  the hospital. He still shuffles down the hall with his blankie at 3 am  and climbs into our bed like he always has, only now I pull him close,  memorize the feel of him in my arms, savor the present. Until recently, it was not unusual for Nathan and I to wake up with both Deacon and Phoebe in bed with us, little arms and legs splayed across our chests. Nathan would untangle himself from the 3 of us and quietly get dressed for work while I would bask in the morning sweetness. I am praying for a morning like that again soon.

Please pray for Phoebe as now begins the drop in her blood counts. The boys have recovered from their sickness this past week and are enjoying visiting Phoebe again. Thank you everyone, for your guest book posts and letters, care packages and food..we have been upheld by the body of Christ and it is so humbling.

Sorry for the late update. Phoebe had a good day with only a bit of nausea and vomiting from the chemo and was sleeping or happy the rest of the day. She enjoyed having her Grammy with her and Nathan and I got to enjoy driving to Lindale to see Ben play in his basketball game. It was nice to take a little day trip and we enjoyed spending time with our boys. The day was enjoyable and relaxing and I am so thankful for that. Phoebe having an uneventful day allows me to relax in a way that I need to for my boys and today was that kind of day.

I will update more detailed tomorrow, just wanted to post and let everyone know we are doing well and Phoebe is hanging in there with her chemo treatments.

Thank you all for praying!

6:15 pm:

Well, turnabout is fair play and Phoebe was ready to rock and roll at 3 am. I laughed at the scene yesterday morning when I discovered Phoebe chattering away and sitting up playing while Mom slept slack-jawed in the bed next to her. I’m certain the day nurse witnessed the exact same scenario with myself and Phoebe this morning when she came on shift at 7:30 am.

LOVE!

While the rest of the patients slumbered peacefully in the neighboring rooms, Phoebe and I were playing ball, making sticker pictures, talking incessantly about my hair and whether she wanted peaches or peanuts and then we had a Veggie Tales marathon as the sun peeked through the hospital windows. I kept eye-balling the clock and thinking “if she goes to sleep now, I can still get an hour and a half of sleep”…”if she goes to sleep now, I can still get 45 minutes of sleep”, and so on until the minutes evaporated with the morning dew and it was time to start the day.

She received 2 more chemotherapy treatments today and has tolerated the initial infusions well. The highlight of the day was watching her walk through the hall during Physical Therapy and put stickers on all of our noses. She kicked a big pink ball around for a while as I steadied her and got some good muscle strengthening excersize.

In many ways she seems more like she was a year ago..her hair is fuzzy and her cheeks are rounder and she is more unstable on her legs. We have regressed in regards to many of her accomplishments, including potty training, but all of those things will come back in time with practice and as she feels stronger. I am thankful that her motor skills are still intact and her congnitive abilities remain the same as they were before brain surgery. I had no idea how fortunate we were that she came through her surgery so well until I read the stories of several other brain tumor resection patients and realized that many of them have long term residual effects in these areas.

Phoebe had a complete resection, meaning that the neurosurgeon was able to remove the whole tumor, no tumors were detected on her spine and no cancer cells were found in her cerebro-spinal fluid 3 weeks post surgery. I am writing these things out today as a praise and a reminder to myself that we are starting this journey with the best possible odds with AT/RT cancer. I also know that information is important for other AT/RT families reading this journal.

More praise: Phoebe’s sores on her bottom look great right now. We have been told they might start to deteriorate again as this chemo pushes her blood counts down, but we are praying that we will not see that happen. Her sodiums have been in the mid to low 140’s for the past 2 days! So, she got on top of all of her issues just in time to start round 2. I am thankful that she is starting out in a better place than I expected a few days ago and I am allowing myself to feel a little glimmer of hope that we might get to take her home after this round for a few days.

Tonight Nathan’s Mom is coming to stay with Phoebe and Nathan and I will be at home with the boys. Their Great-Grandparents took them to the Dallas Aquarium yesterday and they had a wonderful time. Seeing more of our families and becoming more united in crisis has been one of the unexpected blessings of Phoebe’s journey. We are so grateful for the many ways that they have come alongside of us in the past weeks.

As for turning the journal into a book, I would love that. We are currently working on a blog where we can post the Caring Bridge posts all the way from the beginning along with the pictures that match the post. Caring Bridge does not acomodate larger pics and many of the recent ones taken with the better camera are larger. We will let you know when it is up and running.

Tonight, please pray for Phoebe’s heart rate, it is up in the 190’s in response to her chemo and her oxygen has dipped a couple of times into the 80″s. Her heart rate should be around 120.  Also, pray that her grandmother will surivive the 3am “Party til the break of dawn” Phoebe fun-time! Thank you all for praying and posting!

9:09 pm:

It was a nice day. In the hour before I dawn I crept into the boys’ room and woke Benjamin up to come to the hospital with me. I had to be here before 7 am to sign the release for Phoebe’s lumbar puncture/ Intrathecal chemotherapy treatment this morning.

It was fun riding to the hospital in the dark and spending time together just the two of us. When we arrived my Mom was asleep in Phoebe’s bed with her arms around her and Phoebe was sitting up just jabbering away. She said “Mommy! Mommy! Ben” when we walked in. I love that.

Apparently the Phoebster had been up all night, playing with toys, coloring, chatting and being generally enthusiastic about life. This is what happens when she gets a stress dose of her steroids. I thought it was really funny this morning, but only because I hadn’t spent the night with her and she was being so cute! Whenever Phoebe’s body is about to experience something stressful, she has to have a “stress dose” of cortisol because her pituitary gland no longer regulates that for her. These are the shots that I will have to administer at home should she have a sudden onset of high stress that her body can’t deal with without the release of cortisol. The doctors have said that anything from an injury to an intense emotional upset could bring it on. This is the issue that I feel most nervous about when I think about bringing her home.

Her lumbar puncture went well and she spent the rest of the morning sitting up, talking to Benjamin, throwing a ball to her Great-Grandparents, talking and playing. She looks so good! She got some more IV chemo in the afternoon and slept the rest of the afternoon while I had some time to visit with my Mom. This evening she is on the 8 hour chemo drip of the drug that could effect her hearing. We are considering giving her an additional drug that sometimes helps ward off hearing loss, but that makes people feel extremely bad and vomit frequently. We have gone back and forth on this one and still feel conflicted. Please pray for us about that decision.

This morning while Phoebe and I were waiting for the anesthesiologist to come for her treatment, we were sitting in the Oncology clinic looking out over the Dallas skyline. Phoebe was in my lap, her fuzzy little head underneath my chin while she rubbed her purple blanket between her fingers. The theme song from the Movie “The Breakfast Club” was playing faintly over the speaker and it brought back a flood of memories from junior high. I looked out at Reunion Tower, the big ball shaped building in downtown Dallas and recalled my sweet sixteen birthday dinner there with my parents when I was in high school.

I was trying to imagine sixteen year old me and thinking “It never even occurred to me that I would have to fight for my child’s life someday.” I was blissfully ignorant of all that life would require of me. But now I have to be a real grown up and weigh options about potentially life-changing medicines for my daughter. I have to consider ethics on a level that I have never contemplated and learn how to navigate the world of cancer with a new medical vocabulary.

I was struck by the way the seasons of my life were intersecting at that moment in the clinic this morning. Life is a bit surreal these days. I’m glad we get to do life one day at a time because knowing this battle was ahead a few months ago would have potentially crushed me. I’m thankful that God gives us enough for today and that His mercies are new every morning.
Praising Him for a fun day with my sweet girl and how special the little things have become..watching her throw a ball and giggle or put stickers all over her arms or seeing her feel well enough to eat spaghetti. It was a nice day…

10:33 am:

Phoebe’s sodium is at 138 which is PERFECT and it has been in the mid-to-high 130’s the last few tests which means she is stabilizing! She has had two good nights of sleep and has been up in her bed playing and coloring. She even made a trip to the play room yesterday!

Taking a nap

She had an x-ray last night to check her feeding tube placement and see if they detect anything new in regards to her tummy. We’re still waiting for the report on that. Thank you all for praying her through. Still hoping to see her tummy get nice and soft again and the fevers to stop.

2:40 pm:

I spoke too soon..sodium is back in the 150’s. I think I’ll quit posting the sodium levels because they change so frequently. Please just continue to pray for that very frustrating issue. She looks good today and is having fun with her Mammaw and Aunt Jenni! I’m hoping to post some pictures later when we have time.

9:35 pm:

Round 2 of Phoebe’s chemotherapy has been bumped up to tomorrow because there is a shortage of the intrathecal (spinal) drug called Methatrexate that they use and they want to make sure Phoebe gets her dose. A drug shortage is something that has never effected me personally, but this particular one really makes me nervous. The shortage was on the news the other night and we have read several articles, so we knew it was happening but did not realize how quickly we would be effected by it. Please pray for that!

Phoebe has had a great couple of days enjoying her higher blood counts and her immune system being a bit more intact. She has been sitting up almost the entire day, coloring, blowing bubbles, playing with Legos and just enjoying herself. I am trying to focus on the fact that Round 2 means we’re closer to the end of this first very intense 12 weeks of chemo. Usually around day 8-10 after the round starts is when her cbc numbers will drop and we will go through what we just went through again.

That is the roller coaster.

Tomorrow morning while I am waiting for her to come out of her lumbar puncture, I will give thanks that we are able to have the medicine she needs, that we are able to receive such great care and that we are one step closer to the end of chemotherapy. I am so grateful for these doctors and nurses that have invested their lives into caring for these children with cancer…what an incredible way to serve others, what a weighty gift to walk out.

Our mailman has been run ragged over the past two days with all the mail and care packages we have received. I don’t have time to thank you all individually right now, but THANK YOU! We have received blankets, and toys for all of our kids, baked goodies, prayer shawls, handmade cards and Valentines, jammies for Phoebe and myself..the list is endless. We love you, our mailman might feel otherwise. 🙂

Thank you all for being on Phoebe’s team! We are so thankful for each and every one of you both for your prayers, and the many ways you have reached out to us and blessed us.

12:17 pm:

From the beginning Phoebe inspired faith in me.

My third pregnancy with Deacon culminated in an unplanned and unnecessary c-section which left me with some post traumatic stress issues. That is a story for another day, but when I found out I was pregnant with Phoebe, I was determined not to have to go through that again.

I still remember the night I told Nathan the news. We were living in Chapala, Mexico about 45 minutes outside of Guadalajara. The boys were all tucked in to bed and we had decided to play a game of Scrabble. Nathan was getting our drinks and snacks while I was setting up the game. I spelled out “WE’RE PREGNANT” with the little white Scrabble squares on the board and waited for him to notice. He sat down, organized his letters for the game, and went to play his first word. He read my message on the board and looked at me with disbelief, and then a huge smile broke out on his face. Deacon was only 10 months old. We were thrilled.

So began my journey to find a natural minded health provider in Mexico that would allow me to have a VBAC (natural) birth with Phoebe even though I had a previous c-section. Joni and Jose Luis, a doula/Dr. team in Guadalajara were the answer to my prayers. Phoebe and I had a fabulous “no big deal, birth is normal” kind of prenatal experience, without being poked and prodded and examined week after week. As we approached her due date my Mom flew in from Texas to wait for Phoebe. Of course we had no idea she was “Phoebe”, we didn’t find out who was in there, whether boy or girl, until she was born, and really we wouldn’t have been the least surprised if she was a boy because we kind of have a track record.

Mom waited there with us for THREE weeks. Phoebe made us wait. She was going to come in her own good time when she was ready. Had I been in the states, I would have been made to have a repeat c-section if I was three weeks “overdue”. Phoebe was monitored by ultrasound every other day or so to make sure she was still looking good, and we were told that we could just wait on baby. So we did. We took walks on the malecon (the waterfront boardwalk by Lake Chapala), we hiked up the mountain trail by our house and Mom took us out to eat a lot. It was a precious time.

On August 16th 2009 Phoebe made her debut after 26 hours of labor. At one point in my labor she was stuck. It was an excruciating half hour or so of back labor. I was made to get out of the water tub I was in, and stand up. I could hear Nathan praying with all of his heart and asking the Lord to release her. My husband does not cry and he was crying. Suddenly she was released and I hobbled back to the water where our beautiful baby girl was born into the arms of her Daddy.
We were awestruck, in love, totally bowled over with joy for the incredible, intimate, non-medical, loving experience we had just shared that ended with the most beautiful prize, Phoebe Lucille Fair. She was three weeks past her “due-date” and amazingly was a very normal 7.12 oz. at birth. She was right on time.

In the past weeks I have replayed Phoebe’s entrance into our lives over and over again and it has brougth me comfort. Nathan was built up by the part he got to play in Phoebe’s birth, it was as if he called her forth and she came. I remember there were several moments during labor where I thought, “I just want to cry and let go of this intensity”, but I knew that if I surrendered to the pain that I would lose the ground I had worked so hard for. I knew the prize was at the end of that pain and if I could just set my face like a flint toward that goal, we would get there.

That is precisely how I feel in the battle for Phoebe’s life. If we will not surrender to the pain, but remember that the prize is at the end of all of it, if we will set our faces like a flint toward the end of chemothrapy, we will get to go home with our baby girl in our arms just like we did on that beautiful day in 2009. God let it be so…

8:45 pm:

My heart is heavy tonight as three AT/RT families we know of are taking their child home for hospice care or have lost their children in the past few days. What do I do with that kind of news? I just don’t know…

Tonight after dinner, the boys asked me to tell them a story. Of course these stories have to include light sabers, a villain of some sort and 3 boys on a mission. So, tonight I told a story about a monster that needed hunting down and three light-saber wielding boys who flew on a super-sonic skateboard until their swords detected evil with a loud ringing sound. The loud ringing sound started once they neared the hospital where Phoebe is and the boys tracked down the monster on the Oncology floor. The monster was named Cancer and the boys burst into each room defeating the monster with their light sabers and the Holy Spirit descended upon the child and healed him/her instantly, their hair grew back and they got up and put shoes on ready to leave the hospital. When I got to the part about Deacon defeating the monster in Phoebe’s room, Ben laid his head on the table and started weeping. My precious 9 year old boy is so broken hearted over Phoebe’s situation. I just held him and cried with him. I talked about it being good to cry with all of the boys and how important it is to say how we feel, how much we miss her, that it hurts to go through this etc. I’m glad it happened, but oh how my heart grieved for my boy.

Ben asks about her daily, wants to visit her often, but has been sick. I think I will take him first for our Mom and son day with Phoebe. Averic asks a lot of questions. Deacon says he misses her but doesn’t really quite understand.

After dinner we Skyped with Nathan and Phoebe at the hospital and I could tell Ben just wanted to reach out and grab her. He kept remarking about how cute she was. This was his first time to see her without hair. The other 2 boys tired of Skype and went off to play Legos, but Ben stayed glued to the screen talking to her, watching her color, giggling about her Phoebe-ness and her sweet little chuckle.

Phoebe has had a pretty good day herself, I think it’s just been a rough day emotionally for the rest of us. This routine is wearisome and not being able to bring Phoebe home has been a let down. We just miss her in our family, in our home, at our table, running around with the boys.

It’s hard to believe round 2 of in-patient chemo starts Friday. It seems so crazy to load her up with chemicals right now when she is still trying to fight her way back from the last round. Please pray for her little body to rally and be in a better place by Friday.

We have been receiving the sweetest care packages full of Valentine’s Day goodies for Phoebe, little knitted hats and headbands with bows and blankets and all kinds of fun things, so thank you if you’ve been a part of that. Phoebe is one very loved little girl and we have such fun giving her all of these things.

Our prayer requests tonight are the same: sodium level, tummy pain and bloating, open sores and fever. Thank you all for staying with us through this storm.