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.

5:51 pm:

It’s been an up and down kind of day. Phoebe’s sores are having a hard time healing and they look deeper today than they have in recent days. Her sodium is still wonky and needs to come down and her tummy is still bloated. The boys are still sick. Those are the “downs”.

The “ups” are: Phoebe got her port “de-accessed” today and had a REAL bath in the bathtub! She was afraid at first, but quickly remembered how to play with her bath toys and enjoyed making me “soup” with her cup and bowl. She didn’t want to get out when it was time. We tried to take a walk around the unit but she was too tired so I carried her and walked around. It was SO nice to have my baby girl in my arms walking without tagging a pole alongside of us.

She will get her new port needle in a few minutes and be hooked up again, but it has been a nice couple of hours of freedom. Over all, Phoebe has had a fun day. She slept for a couple of hours on her Grandad’s chest and then played with her toys for a while. My Grandparents came by today and they were thrilled to see Phoebe so up and alert. I’m afraid my posts have made it seem that she is in constant pain, which she is not. In spite of her sores and tummy pain she has a good morphine drip that keeps her pain under control for the most part. She does get restless and frustrated at times, and that can be a side effect of the steroids she is on.

She had an episode today where she “zoned” for half a minute and was not responsive. This is common when her sodium levels get high and can be very scary. Keep praying for that sodium..

I will leave the hospital tonight and have dinner with Nathan before heading home to my boys. I am praying for total IMMUNITY to whatever they have.

My Mom and Nathan’s Mom will take the Phoebe shift tonight and she will be in good hands with her Mammaw and her Grammy. Thank you all for your continued prayers.

1:28 pm:

Phoebe had a rough night and my Mother-in-law called at 6:30 this morning to tell me I should come in, Phoebe was asking for Mama. I quickly showered and packed for the night, grabbed Phoebe’s clean blankets and headed out the door. My 3 stooges were bleary eyed, ambling down the hallway in the dusky morning light, and I got to kiss their noggins before I left. Averic has been down with fever and vomiting the past two days, so I hate leaving him especially right now.

Phoebe falls asleep playing with her toy

My Dad came to get Ben this morning for their weekly trip to Lindale so Benjamin can play in his Upward basketball games. I hear they won and Pappaw rewarded Benjamin with a Texas-sized chicken-fried steak. Deacon is on the mend with just a residual cough, but needs prayers because his little four year old heart is having a hard time each time I leave to go to the hospital. He begs to go with me and it breaks my heart. When he is well, I plan on bringing him up to spend a day with Phoebe and I at the hospital. I’d like to do that with each of the boys if everyone will just get healthy. I usually have a date with each boy by himself at some point in the month, and I think we are all missing that right now.

Phoebe was in a better place when I got to the hospital, but has had a difficult time throughout the day. Her morphine dose has gone up again so she can be comfortable. It seems that the progress we were hoping to see this weekend with her blood counts going up is not happening. Please help Phoebe fight today by praying for the following:

1. Fever today is 102.1

2. Sodium still high @ 159..the pattern today has gone 166, 153, 159     (1 step forward, 2 steps back)

3. Not yet tolerating a full NG tube feeding and she needs the calories     to heal.

4. Tummy very distended and uncomfortable. Her “innie” bellybutton is     an “outie” right now. They still have no explanation for this.

5. Left lung is still partially collapsed and breathing shallow.

6. Open sores on bottom need to heal.

7. She will receive more IV chemotherapy today on top of all of this.

Nathan’s Mom got to sleep for a few hours today and I think the 2 of us will stay tonight. It seems like Phoebes needs are a 2 person job right now because she is often uncomfortable or irritated or not sure of what she wants. It also helps me to have someone here to make decisions with about IV fluids and what we should try next or what questions to ask the doctors. Often times, just making the every day minute by minute decisions is the most difficult thing because it’s overwhelming.

Many of you have sent songs, or words and impressions you’ve had from the Lord and those speak straight to my heart. Thank you for praying and sharing. Nathan and I go over those together and we feel so blessed to have such “involved” friends, family and even people we have never met.

I hope to post again tonight, hopefully with a good report!

7:56 pm:

Phoebe had a good night with her Grammy last night. She has had a hard time getting comfortable in her bed with her sores and her tummy bloating so they increased her morphine drip last night and she slept peacefully. The morphine makes her face really itch so she receives Benadryl to help with that as well. She is being seen by the wound care people in the hospital and has a regimen we follow to keep her bottom protected until those sores heal up.

Phoebe Loves to Brush Her Teeth

Sodium is still all over the place with a high of 166 today. I have a hard time not getting all bent out of shape when I get the sodium reports. Nathan reminded me today that there’s nothing I can do about her sodium and that she has a whole endocrine team consulting about her situation around the clock. I do know this, but it’s hard for me not to react to the news each time that number climbs. Her high sodium keeps her tummy bloated and tight and makes her feel miserable. If high enough it could cause a stroke. I constantly have to give these things to God because I have several months of this ahead and can not live in this constant state of hyper-concern. Peace Lord..

The endocrine team is always commenting how tough a case Phoebe is to regulate because she is so sensitive to any change in her intake, ie: if she drinks an apple-juice box it can totally change their game. Most DI patients are not so prone to sodium swings with such a small intake, so Phoebe really throws a wrench in their DDAVP scheduling and dosage. So, they are constantly tweaking and changing things, IV fluids and the timing of her shots and the specific dosage. Grrrrr.

In spite of all this, Phoebe is managing to feel well enough to sit up quite a bit and play with her stacking blocks and put stickers in her sticker book. She also enjoys coloring or throwing her blocks into the bucket, catching bubbles and being read to. I got to see her do all of the above this afternoon and that was nice. She was having a good time and smiling even though her eyes were a little silly from all the morphine. She asked for some clothes and I put her jammies on her which she appreciated.

Her appetite is growing and she had some chicken and green beans and peas today, but we could not get her to drink. She NEEDS to drink and I’m not sure why she stopped since last night, but please pray for her to feel thirsty, she needs to help lower her sodium levels by drinking fluids. She is also receiving nutrition through her ng tube and seems to be tolerating that well so far. We are also avoiding salty foods for her.

We have received so many lovely toys, cards, baked goodies etc. and I recognize many of your names from Caring Bridge even though I don’t know you in real life, and we just want to say thank you for your thoughtfulness. I can not believe the stories I hear about the people who are praying for our little Phoebelicious from all over the world!

And thank you to those of you who have given financially towards Phoebe’s care and are helping us to be able to live here in Dallas near the hospital while she receives chemo. This is a huge blessing for us, and especially our boys so we don’t have to split up our family and commute. Phoebe has been in the hospital for forty days, since Jan 1st. It’s hard to believe she hasn’t been outside in forty days.

Tonight Nathan and I are BOTH home with the boys while Nathan’s parents are with Phoebe. We are enjoying an almost normal night with homemade cookies and America’s Funniest Home Videos. It feels good to laugh with the boys and unwind. Tomorrow I will be back at the hospital with the Phoebster and she will have her outpatient chemo IV drip in the evening.

Thank you all for traveling with us down this grace-filled, sometimes raw and too-real, road. Thank you for leaving your encouragement in Phoebe’s guest book. We read it daily, often cry, sometimes laugh or marvel at who is following Phoebe’s journey…

all our gratitude,  ~Amey