News interview about Phoebe

http://www.wfaa.com/news/health/Great-Granddaughter-of-Zig-Zigler-fights-brain-canceer-140778233.html

10:45 am:

Tonight Nathan and I went through all of our family videos and got to see our sweet Phoebe when she was healthy.
There she was, July 4th weekend, slurping on an orange popsicle on her Mammaw’s front porch, rocking away on the rocking horse, “Happy 4th of July!” she said in a sing-song voice. There she was on the couch with Mommy growling in jest until I would wake up with a startle from my pretend nap, reducing her to a heap of giggles. There she was blowing out her birthday candles, blond pig-tails bobbing, smacking her lips for a bite of cake…that was just in August.

How I long to jump through that screen and scoop her up and kiss her sweet face and hold her in my arms without a tube, without a med-schedule, without a port, without all of this heavy ache that leaves me bone weary. I look at her face in the video and think “she didn’t have the tumor then”, or “that tumor was growing in her brain right then, and we had no idea.”

Love long, and drink deep these little ones entrusted to your care. Memorize the smell of their sweet baby scent, boy sweat, or freshly shampoo’d silken toddler hair. Trace that forehead with your finger while she sleeps, forget the “rules” and let her linger long in your bed, snuggled into your heart while she slumbers. These are the days.

Oh how I miss her. She’s only been asleep for a week and it feels like five.

And there’s all this waiting for neutrophils, and blood counts to climb back out of the ditch and get back in the fight. Waiting for cultures and tests to come back and waiting for Phoebe to rally back from this sepsis.

There’s a Phoebe shaped shadow in this house and I am spent with trying to remember how she fit with these boys and this family when she walked around and we didn’t notice or applaud the miracle it was. I should have looked harder, breathed more “thank you’s” to her Designer. I do that now.

The clothes hang, dusty in her closet. The purple sweater that saw her through fall, the one she wore the night we brought her to the ER, the flower girl dress from just September..and there’s still a clod of dirt on her tenni’s, dirt that she put there, while playing, while living, unaware. And my heart cries out, “Jesus, please…”

There is a poem by Pablo Neruda that I have always loved. It is about love lost, but several stanzas keep coming to my mind lately when I think about Phoebe. I think I must be grieving life “pre-cancer” with Phoebe, because these words resonate with me so much right now..
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Tonight I can write the saddest  lines. To think that I do not have her. To feel that I have lost her. To hear the immense night, still more immense without her. And the  verse falls to the soul like dew to the pasture. What does it  matter that my love could not keep  her. The night is shattered and she is not with me. This is all. In the distance someone is singing. In the distance. My soul is not satisfied that it has lost her. My sight searches for her as though to go to her. My heart looks for  her, and she is not with me. The same night whitening the same  trees. We, of that time, are no longer the same.
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I know I still have Phoebe, please don’t mistake my feeling of loss as one of giving up hope. I feel a deep sadness for the change in our family dynamic, for the absence of her little spirit in our home each day, for the loss of “life before cancer”. So, all this waiting continues for another day.

Please pray that Phoebe will pull through this sepsis, that her immune system will come roaring back in the next couple of days and begin to fight the infection raging in her body.

All our love and gratitude to you all, for staying with us and praying us through…

7:40 pm-Swollen Phoebe:

Today Phoebe is pretty swollen and to be honest, it was a shock when I first put my eyes on her this afternoon. The fluid in her body is immense, puffing her up and making her little feet and hands red and taut.

A CT scan today showed that her lungs are mostly collapsed minus a small portion of one lung. They intensified her ventilator setting and gave her more sedation. They had to go back up on her blood pressure meds as well which is disappointing. BUT, she has some neutraphils and we love neutraphils. She has a few white blood cells but needs MANY more in order to fight the sepsis.

Today I had to remind myself again and again that “we walk by FAITH and not by SIGHT”, that “faith is the substance of things hoped for, evidence of things unseen.” My eyes tell me something is very wrong with Phoebe. Seeing her attached to all of these lines, 3 different IV sites, swollen and still, her chest moving out rythmically with the ventilator, makes it difficult to see how she will recover. But, I walk by FAITH and not by what I see.

My heart knows very well that God can turn a thing around very quickly. He turned me around at age 21, took a dead girl and breathed life into her, in the matter of a day. He set my feet on a straight path. I didn’t do that. I didn’t pull myself up by my bootstraps and get my act together, He did that. We made a trade; I gave Him ashes, He gave me beauty and invited me to a life of adventure and scary surrender. I said yes, and it has cost me everything and blessed me tenfold. Such a Suitor is this Hound of Heaven, relentless in His pursuit. And all because LOVE compels Him.

Tonight, I think on this:  Romans 8:35-37

“Can anything ever separate us from Christ’s love? Does it mean He no longer loves us if we have trouble or calamity, or are persecuted, or hungry, or destitute, or in danger, or threatened with death? (As the Scriptures say, “For your sake we are killed every day; we are being slaughtered like sheep.”) No, despite all these things, overwhelming victory is ours through Christ, who loved us.”

He loves me, and He is good. His character is love and He has shown Himself true even when I have been faithless. I keep thinking of Job’s words to his wife, “shall we only expect blessing from God and not suffering?” No, everything good in my life is because of His mercy. With a thousand miracles behind me I can’t shake my fist at Him now. I must trust that He knows what He’s doing. And so I wait on.

I pray this night will hold a million more miracles in the secret places of Phoebe’s body, white blood cells bursting to life inside those veins and rushing to every site that needs repair. May it be so, Jesus.

8:46 am:

Clinging to the hem of His garment….about to go downstairs for MRI. Thank you all for praying!

1:11 pm:

Phoebe is back from her MRI. Now we just wait for the radiologist and Oncologist to read and assess the results and give us a report. We were told this could take a while, so I’m expecting a long afternoon of waiting. I will post the MRI results here as soon as we have them. Thank you all for praying!

6:01 pm-MRI Results:

CLEAN! CLEAN! CLEAN! NO CANCER on the MRI!
Rejoicing! Praising God! The weight of the world is lifted!!
Thank you all for standing with us!!!
Celebration goI should claring on in the Fair Family! xoxoxo

8:42 pm:

Nathan thought I should clarify that although Phoebe’s MRI came back CLEAN today, with NO signs of metastasis or tumor growth, we ARE still fighting this cancer through chemotherapy. We are on week 5 of a 52 week chemo protocol. We were very concerned about today’s MRI because her sepsis has many of the same symptoms as cancer metastasis. Cancer or metastasis after this hard-hitting chemo will mean the end of chemotherapy for Phoebe, so this has been  HUGE day for us.
MRI days are the most nerve-wracking days for cancer families because you wait to discover if all your fighting has paid off.

With other types of cancer you sometimes have the option to switch protocols and see if the cancer can be killed with a different type of chemo. With AT/RT, there is only one protocol with a 50% success rate, and we are on it. It is called the Dana Farber protocol and was developed in Boston. The other protocols available for AT/RT have about a %10 success rate. So, we are fighting with the big guns, this is nasty chemo, there is nothing stronger for it at this time.

Today we are thankful for the opportunity to keep on fighting! Please pray for healing from the fungal sepsis over the next several days!

Thank you all for praying!! AMazing day!

9:37 am:

Phoebe’s blood pressure just dropped into the danger zone for the second time in the last several hours. They are having a difficult time getting it back up and are preparing to intubate her. They will also place a Picc line or central line (that can deliver meds directly into a main artery) because she needs more access.

Her cultures tested positive just this morning, for yeast and another unspecific fungus. The doctor said they will start anti-fungal meds immediately. In a sense, this feels like good news, because it gives a possible reason for her current state other than cancer metastasis. I know that sounds crazy, and I know a fungal infection is serious business especially while she’s neutropenic, but I’ll take it over cancer spreading any day. At least now we have something specific to focus on.

That’s all the news I have for now. I will update again later in the day. Please pray for her body to fight this fungal infection, that she will do okay with the anesthetic while they intubate her and during this next period of time while they keep her sedated. Pray for her blood pressure to regulate and that killing this infection will be the key to seeing Phoebe wake up and continue to fight this cancer!

2:27 pm-MRI Tomorrow:

She is intubated and peaceful with two new lines, one in her leg and one in her arm. She had her lumbar puncture this morning and we will wait to hear the results from that regarding the possibility of meningitis and/or the presence of free-floating cancer cells in her spinal fluid.

The MRI will be at 9 am tomorrow morning and we will most likely have the results at some point in the afternoon after the neuro-radiologist reads it. This MRI carries the weight of the world. If the cancer has metastatized the chemo stops. We have always known that. You get one good chance to fight AT/RT cancer. When it comes back after chemo, it rages like a monster. So, as you can see, our hearts hang on that MRI result.

We feel joy, that maybe we are “only” fighting fungal sepsis. We feel dread about what tomorrow could hold. We are staying in the moment because we have grace for that. Tomorrow’s grace has not arrived yet, we’ll get that tomorrow. Today’s worries are enough for today. We feel nervous, peaceful, hopeful, broken-hearted…a whole array of emotions.

Thank you all for continuing to pray and reach out to us. We gather strength and courage from knowing there are so many of you storming the throne for our Phoebe.

12:21 pm:
There is new movie  called “Deadline.” It is premiering in 40 cities across America. In each city the proceeds go to a local non-profit organization or cause. They  have chosen Phoebe for the Dallas premier. You can buy tickets and watch a trailer at the link below.

http://www.deadlinefilm.com/dallas

10:08 pm:

ICU is not my favorite. The waiting room is a sea of grief-worn faces, bleary-eyed parents still in their pajamas at 2 in the afternoon and family members looking forlorn, waiting for news.

We are not allowed to eat in the room here on the ICU unit, so we have to take our meals individually in the waiting room, and it’s just sad to be surrounded by so much pain. I feel fragile myself, and reluctant to talk to people about Phoebe’s situation lest I dissolve into tears in front of a complete stranger who is also weighed down by their own crisis. I remember feeling so scared to move to the Oncology floor because it made the reality that Phoebe had cancer really sink in. Now I just want to go back.

It’s hard to say how Phoebe is doing. One the one hand, her heart rate is beautiful at 138, she is peaceful and her sodiums are coming back in the mid-140’s range. One the other hand, her CT scan showed some pockets of fluid in her abdomen typical of kidney failure, her mental status is not changed, she still sleeps endlessly and her Diabetes Inspidus combined with kidney issues is making her fluid balance very difficult. This evening her blood pressure dropped to 49 over 20 after she had 2 huge wet diapers in a row and they had to give her an emergency fluid push in her IV to stabilize her.

They decided not to do the lumbar puncture to test for Meningitis because she is already getting the antibiotic they would give her if the LP came back positive. The MRI on Monday will definitively tell them what they want to know. The CT scan tonight told them that she does not have Neutropenic Colitis, which is good.

Her Oncologist still says that his working diagnosis is that she is septic from infection even though it hasn’t been detected on any of her blood screens. The ICU doctor says the part that doesn’t make sense, even if she IS septic, is that her mental status has not improved with the antibiotics which is usually the case. This leads to concern that her MRI on Monday could possibly show metastasis of the cancer throughout her CSF fluid. A lot hangs on that MRI and we are trying not to get ahead of ourselves, but it is difficult.

Regardless, Phoebe’s mental status needs to improve. She is all “there”, can answer questions correctly if we bug her enough, and will sometimes open her eyes and make eye contact for a split second, but she is not up at all. She can’t sit up on her own, gets easily agitated and won’t engage. So, we need a miracle..our miracle to return to us..to fight back. We have high hopes that early this next week when her immune system kicks back in, she will be looking better. Please pray for us, we are in the thick of it…

All our love to you all for praying and staying with us on the journey, Phoebe is one blessed girl to have the prayer team she has, and so many people loving her from a distance.

6:50 pm:

Right now we are doing a whole lot of waiting for Phoebe. She has been asleep still for most of the day and her mental status has not improved much over all, but we have had some bright spots. Last night in the middle of the night she said very clearly. “I want some milk Mom” and today she asked for her computer but didn’t play with it for long. She also played with stickers with her Mammaw for a few minutes. These are good signs.

She had a blood transfusion today to help her hemoglobin and received platelets as well. Her heart rate climbed back down into the 130’s-140’s after the transfusion and all of her numbers started falling into place, it was beautiful to see. Her sodium is still high, and they are working on bringing that down slowly. She had an abdominal ultrasound today which we have not heard the results on yet and tomorrow she will have a CT of her chest and possibly a lumbar puncture to test for Meningitis.

The doctor was very pleased with the progress she made today and wants to see her continue to wake up a bit more by tomorrow as her electrolytes come more into balance. Her sleepiness is the biggest concern. She just can’t seem to pull out of it although her cognitive abilities don’t seem to be diminished at all. She played with my hair today and said “snuggle me Mom”, and her eyes followed me around the room. That was so good to see and is such an improvement from yesterday.
At this point we are praying for “just an infection”, or “just sepsis” as crazy as that seems. The alternative is a bad MRI that shows tumor regrowth or metastasis of cancer cells throughout her Cerebro-Spinal fluid. Any of these issues could account for her sleepy mental state.

Nathan and I are here together this weekend and my Mom took the boys home with her for some fun in the country. They were excited for a change of pace and it has been so good for Nathan and I to get some together with Phoebe. We have had some tough conversations today about what the different diagnoses’ would mean and some wonderful dialogue about how we see the Lord working through Phoebe’s life right now.

Your theology really gets a work out in a crisis like this, and it has been good to realize that what we believe about God and His goodness has not changed in the midst of all of this, but only been strengthened and  purified. I hope to share in more detail about that in one of these posts, but tonight I am wiped out. The last two days have been pretty intense and I am running on fumes and your prayers. Lots of tears today, and a roller coaster of emotions. Thank you for lifting us up!

5:15 am:

I am awake in the wee small hours watching this sweet girl who continues to keep the doctors (and her Mama) on their toes with her ever changing potassium, magnesium and now ammonia levels in the blood. Please pray for Phoebe and her renal issues, they have talked about a transfer back to ICU if things don’t improve. They are drawing labs consistently to keep a close eye on all of her blood levels. It seems that she keeps throwing them curve balls, when one level starts to improve, another level drops or soars out of range. Her electrolytes need balance and her neurological state needs improvement. Thank you all for praying!

11:24 am:

We are being moved to ICU. Her electrolyte issues are more than they can keep up with on the Oncology floor. Waiting on MRI until the metabolic issues are in a more stable place. PICC line being placed when we get to ICU so that she can receive more fluids as needed since she is being heavily supplemented. Kidney damage confirmed, not sure how long it will take to reverse or IF it will reverse. Chemo drug Cisplatin is the damaging agent for kidneys as well as Methotrexate which she received both of this past week on round 2 of chemo. She will continue to get Cisplatin, most likely continue to see kidney damage, but killing the malignancy is more important….so much to take in…

8:06 pm:

The (tentative) diagnosis is that she has a raging infection and is septic. It is only “tentative” because she has not had a blood culture grow anything yet. But, the kidney failure, the metabolic issues, the labored breathing and fever and sky-rocketing heart rate and low blood pressure are all infection/sepsis indicators. She is not very lucid and her oncologist used the word “delirium” to describe her right now. She is ‘there’ and she responds to us when we make her, otherwise she sleeps in a very heavy sleep with labored breathing.

She is getting Magnesium and Potassium and free water and her TPN nutritional IV to help balance out her electrolytes. She is getting phosphate for her kidney function and of course a couple different antibiotics. Her fever is 103.1 right now and her heart rate is hitting the 200’s. Her blood counts are bottomed out, she is neutropenic. She has nothing to fight with right now physically, this is where we fight for her. And you have been. We see thousands of you..and we are built up and strengthened. We feel your love, your prayers supernaturally holding us up.

Several times today I thought “why am I okay?” It is truly the peace of God that passes understanding, there is no other explanation.

We met with Dr. Bowers tonight and felt so much better after talking with him. Neutropenic Sepsis is nasty. The good thing is, when her immune system comes ROARING back in the next 4 or 5 days, she will have what she needs to fight this. Until then, we stand in the gap for her and pray her little body through. I know God is there with her in her ‘delirium’, giving her courage and comforting her and that is what I am trying to meditate on. She is not alone in this even when I feel like I can do nothing for her.

Tomorrow she will have an MRI so they can get a more detailed picture of her brain to look for new tumor growth (although they detected none on the less detailed CT scan) and Methotrexate toxicity to see if this could be a cause for her impaired lucidity. He expects that her lack of  lucidity has to do with the fact that her body is overcome with a nasty infection and it has no tools to fight right now. This taxes her body incredibly and upsets the balance of everything. He also assured us that this IS the “I want to quit” part of chemo that will be part of this first 12 weeks. It is always reassuring to hear him say that.
Some have asked about the difference in the first 12 weeks of Phoebe’s protocol and the rest of the 40 weeks. I will write about that more in detail when I fully understand how the protocol works and when I am not so worn out from the events of the day.

Phoebe needs your constant prayers especially these next 4 days while her body is neutropenic and raging with infection. Thank you all for the love and support you have shown us!

6:53 pm:

It has been a tough day. It started out with a phone call from Nathan while I was still asleep this morning, and subsequently, a torrent of tears while the boys piled into my bed with their concern.

Her potassium is very low and her kidneys are not doing their job correctly still. She has had a very large amount of potassium given through her IV and still her number continues to drop. She is completely out of it and has slept almost non-stop for six days. She wakes only when made to, and then only half way, otherwise she wakes only to vomit. She will have an MRI in the morning to see if there is tumor regrowth that could be causing pressure and inducing vomiting. She is completely neutropenic right now.

And here is where I remind myself again of Dr. Bowers’ warning; “You will be imploring us to stop at the end of this 12 weeks, it’s that difficult.”

Chemo is not for the faint of heart, and I am having to grow some really thick skin watching my baby girl suffer like she is. I have taken comfort in the reminder that God is ministering to her little-bity self in a way that I can’t even see or understand. I know He is intimately involved and near to her in her pain. He knows what it is to suffer through no wrong of His own.
I arrived at the hospital about an hour ago. We had a good school day and just as we were studying the different reasons birds have “calls” in science, a couple of birds started calling to each other right outside our  front door. We went to investigate and even though we never saw the actual birds, we found their nest and delighted in the moment. It was a beautiful day and squirrels were hopping through our yard, the sky stretched out wide and everything felt so alive. I took a moment to marvel at creation and all the life going on around us, and I felt a surge of hope course through me. I don’t know how to explain it, but I was encouraged by His creation, that life still goes on, that He keeps all of this going by His design. How much more does He invest Himself in Phoebe whom He knit together in the secret places, fashioning her in His image and for His glory? He loves her so.

Right now she is having a blood transfusion. These have become a welcome event because she seems to feel so much better afterward. She had to have another IV placed in her foot today for the transfusion because they can not stop her IV fluids through her port. She has to receive potassium around the clock right now as well as nutrition, so they had to start a whole new IV for the blood to run through for 4 hours. Now we will receive potassium reports and electrolyte balance reports along with the every 4 hour sodium update.

Last night before I went to sleep, I was led to a few verses in 2nd Corinthians Ch.1;  Paul is writing to the church at Corinth along with Timothy and he starts out by talking about comfort.

Vs.4-7 “He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with His comfort through Christ. Even when we are weighed down with troubles, it is for your comfort and salvation! For when we ourselves are comforted, we will certainly comfort you. Then you can patiently endure the same things we suffer. We are confident that as you share in our sufferings, you will also share in the comfort God gives us.”

If God can use, or is using, this time of suffering in our lives to somehow speak to others or comfort them, hallelujah! We were created by Him and for Him and I pray that it will be so. We long ago surrendered our rights to our lives and I am so thankful for that hard reckoning in past years. I can not imagine having to do that now for the first time in the midst of this crisis. I am also thankful for hours and years of training and study about the nature and character of God through our YWAM training. I stand on those truths now more than ever.

In this part of Corinthians Paul goes on to talk about the trouble they experienced in Asia as they ministered there, and these are the words that resonated with me so well; Vs. 8b-10) “We were crushed and overwhelmed beyond our ability to endure, and we thought we would never live through it. In fact, we expected to die. But as a result, we stopped relying on ourselves and learned to rely only on God, who raises the dead. And He did rescue us from mortal danger, and He will rescue us again. We have placed our confidence in Him, and He will continue to rescue us.”

We rely only on God who raises the dead…He will continue to rescue us. Amen.

Pray for potassium,kidney function, lucidity, an immune system that will ROAR back into action, healing for damaged cells, the death of cancer.

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.