2:02 pm:

Nathan posted a video of Phoebe on our facebook pages if you would like to see it and haven’t yet. She is sleeping in the video, but you can see how much better she looks after the swelling has gone down and also having the tube out of her mouth.

Phoebe is starting to wake up as mom and dad look on.

She is still having a lot of withdrawal symptoms and was up most of the night. They explained today that her whole body is trying to bounce back from the sepsis which means that her liver, her kidneys etc. are not metabolizing at 100% and that ridding her body of the Fentanyl and other pain meds is not going as smoothly as it would otherwise. It will just take time.

Her muscle tone is also extremely lacking since she has been bed-ridden for so long so she is having trouble coughing the excretions from her lungs and her breathing is labored. They are suctioning her lungs frequently and respiratory therapy is working with her. She is unable to sit up or even hold her head up straight without it tilting to one side right now. The sepsis has been a big setback and she has a lot of physical therapy, speech therapy and occupational therapy ahead of her.

They are discussing doing another MRI on Monday or Tuesday to make sure that everything is still clear. They don’t seem overly pleased with her mental status and that makes me nervous. On the other hand, they tell me that the drug withdrawal is responsible for a lot of what we are seeing with her right now. She is just uncomfortable and feeling the effects of the weaning from the heavy meds. When she is more lucid she seems very “there” to me..gives high fives on command..has answered “yeah” and “no” in little whispers to various questions etc.

So, we just wait some more, for the drug-haze to clear, for the muscle tone to improve so she can cough up the stuff in her lungs, for her organs to get back to their normal function.

Her white cell count is very high right now and she has had fever the past couple of days which looks like infection, but given her situation, no one is sure why her counts are like this having been on antibiotics for so long. Today they are adding in some probiotics for her tummy and attempting to start back with the ng tube feeds. Please pray that goes well. She is just very weak over all right now and has an uphill climb just to get back to normal. We need grace for the waiting and protection from discouragement.

Baby steps..baby steps…

5:20 pm:

I have to be honest, coming off the tube and waking up has not been what I pictured. Her eyes are open yes, she is giving high fives from time to time, but she is a little distant, she is not talking and she is having withdrawals from all of the heavy pain meds and sedation she has been on the past 2 weeks. This includes erratic breathing and shaking as well as diarrhea and her eyes rolling back in her head from time to time.

It makes sense, she has been intubated for two weeks fighting for her life through sepsis. I think I expected her to smile at me and say “Hi Mom”..or something to that effect, so maybe my expectations were a bit unrealistic. She needs time to recover, I know.

They are slowly weaning her off the Fentanyl and trading it out for Methadone and Valium and please pray she does well with it in the meantime. Her breathing is still quite erratic and that is concerning to the doctors although she has held her own being off the ventilator since 10:30 this morning.

Her hands and feet look great, they are healing beautifully and we are so thankful for that! I will have Nathan post some pics later as she continues to wake up more.

I’m off to cuddle with the Phoebster now, something I haven’t been able to do for two weeks! We are thanking God for baby steps and knowing that we will continue to see improvement each day. She has PULLED THROUGH sepsis, and that is amazing!

Thank you all for your love and prayers!

6:15 pm:

Advanced Neutrophil Count, 18,000!!

She looked into my eyes! She has been rather awake at intervals all throughout the day and she looked into my eyes with recognition. It was the best feeling in the world to see her seeing me. She is of course irritated at the breathing tube down her throat and greatly displeased that her arms are tethered to the bed so she can’t pull it out, but she is waking up. They are weaning her from the pain meds and replacing them with Methadone and Valium which she will in turn be weaned from a few days from now.

She was taken off all antibiotics yesterday but spiked a fever this morning so they put her back on. Tomorrow they will REMOVE THE TUBE!! We are all so excited to see her awake and talking we can hardly stand it. She is already more alert now on these pain meds than she was the 5 days before we came up to ICU when she was so out of it after chemo.

Tonight my Mom will stay with her and I will go home to my brood of boys, and tomorrow will be a super Phoebelicious day as we all get to witness her transformation without the breathing tube and sedation. Please continue to pray for her tummy, that the swelling will continue to abate and that she will be able to tolerate her ng tube feeds. Also, pray that she does well with her respiration tomorrow when the tube is removed and that her lungs are able to handle the job alone.

We are so thankful to be where we are and grateful to have a day like tomorrow to look forward to. Last week was a bumpy one and a total transformation has taken place before our eyes! Here’s to Phoebe’s “Wake Up!” party tomorrow!

12:32 pm:

Advanced Neutrophil Count…..8,175!! Immune system reporting for duty and fully engaged!

I am appreciating the doctor’s metaphor this morning, “Phoebe was in a thick forest, now she is coming out of the woods.” He was very pleased to see that her swelling has reduced by almost half, her vitals look good and she had several bowel movements (big excitement after having been on pain meds for so long) last night. During rounds I kept hearing “she’s definitely turned a corner”, and it was music to my ears.

Our Oncologist came by last night and it was decided that Phoebe will have an undetermined amount of time off chemotherapy in order to heal. Her hands and feet have gaping skin and are shedding and weeping so they will need some time to heal completely before her immune system gets knocked down again.

We had some discussion about the chemotherapy drug that caused the neurotoxicity and both agreed that it is difficult discerning how to move forward. The drug that caused the harm to Phoebe also causes harm to cancer cells in a significant way and seems to be key in this particular protocol for keeping the tumors away. He was reluctant to make any decisions right now and I agree. Let’s just focus on getting her better before we move forward and are faced with more difficult decisions. The truth is, the response Phoebe had to this med is so rare that there isn’t really a “plan” for how to move forward or change protocol with such patients. Oh me.

Her hands have transformed in the past 2 days! To the untrained eye they look like a hot mess, but if you had seen them 48 hours ago, you would see the positive change. The golf-ball size blister is totally deflated and there is only a pocket of skin where it was. Her other blisters are popped and healing and peeling. Her legs look so tiny at that normal size! Her tummy, as per usual, still needs to deflate so her lungs can have room to breathe. This will be key in trying to wean her from the ventilator by Friday. Please pray for a soft tummy and that all the remaining fluid in her abdominal cavity will leave.

She’s looking good and wanting to wake up and I’m thrilled. I am praying for a nice steady weaning off the ventilator and anxiously awaiting that chance to look into her eyes again. I can’t wait to hear her voice!  There is so much to look forward to this weekend and I am so stinkin’ blessed by the way people have stood with us during these past few weeks. Thank you all for holding our hands through the storm. God has sustained her beautifully as she teetered on the edge during her sepsis and I am overwhelmed by that. Seeing her rally has been amazing!

Soon we will have “Phoebe wakes up!” pictures on here! Thank you Team Phoebe!

9:04 am:

Neutrophil count yesterday….603.
Today……..3,000!!!    (Yes, this is a revision from the 339,000 I had here earlier, the nurse calculated incorrectly.)
An ANC # of 3,000 still means her immune system has recovered!

5:22 pm:

Imagine the thrill I had today when upon arriving to the hospital I discovered that Phoebe’s hands are HALF the size they were yesterday! Her whole face looks so much better and her eyelashes can be seen again since the swelling has gone down. She has even made a couple of peeks out at us which is just heavenly! We erupt in “oohs” and “awwwws” whenever she tries to open her eyes. It’s so sweet seeing her move.

She will lift her hand as if to wave, or grab the cord to her breathing machine and hang on to it. Her feet are getting better, but the only way you can tell is that the swelling is considerably less and the color has returned to the top of her feet. Until a couple of days ago her feet had the appearance of purple socks the discoloration was so bad. It is quite  obvious now, in spite of all the broken skin and burst blisters, that the blood flow and healing are starting to really make them better.

Today as I drove to the hospital I was thanking God that I could make that drive and actually enjoy it, that I had the luxury of a clear, unworried mind so that I could really appreciate things like the weather, the beautiful houses I was passing, the clouds. I am thankful to be able to breathe easy, to look at my girl and know that she is working her way back from this incredibly scary bout of sepsis. Eyelids less swollen and shrinking hands are miracles in my life right now and I hope it remains so.

How many times I have thought these last several weeks that I took our lives for granted before cancer and assumed my children would skate by without any major setbacks on into adulthood. I knew that Phoebe and I would be best friends, I imagined mother-daughter talks, shopping for her wedding dress and of course being with her when she herself became a mother. All of these things seem like precious gifts that I no longer automatically assume I will receive. They are the deep longings of my heart for a life with my daughter. There is so much to look forward to! My depth of gratitude for the seemingly simple, has multiplied by a zillion in the face of all this mess.

I know that it is unlikely that Phoebe will be able to have children because of her damaged pituitary gland that regulates hormone production and one of the chemotherapy drugs she receives. Realizing that for the first time caused a little place inside of me to go numb. Understanding  what she is trading for her life, for a chance to grow up, makes the fight all the more impassioned for me. Cancer has already stolen much and things like fertility easily fall by the wayside in the quest to just live. I don”t want to give up any more ground, don’t want to make any more concessions, but cancer drives a hard bargain and eventually I feel I might be willing to trade anything for her to live. That perspective really reduces any ingratitude I might have right down to zero.

Life is a gift, and now when I see people wasting their’s it makes me mad that Phoebe is fighting so hard just to have a taste at what they so flippantly throw away. “C’mon people!” I want to say, it’s a gift, an invitation to the most incredible adventure. It will be marked with bright beauty spots, seeing your baby for the first time, loving someone so much it knocks the breath right out of you, standing in awe of the majesty of a mountain or a sunset that deserves a hallelujah chorus. There will be parched desert seasons, and times when grief is a deep abyss or your goal for the day is just to get out of bed. But this is the stuff of life in a sin-tainted creation.

And now we have to beat it back, like cancer, we have to stare it down until it whimpers in the corner. I think of Genesis 4:7b)  And if you do not do well, sin is crouching at the door. Its desire is  for you, but you must rule over it.” And so I endeavor to rule over any ingratitude that might rear it’s ugly head. There’s too much to fight for, and having the opportunity to fight for what I formerly assumed was a “given” has given me the gift of being able to recognize the miracle in each moment.

Phoebe is swollen to twice the size she normally is

7:15 pm:

Update coming soon with good news! Just a bit busy at the moment, but will have a detailed report later! Phoebe is on her way back to us!

9:54 pm:

Let me just make a list of all the good things that have happened today with Phoebe, that’s easiest!

Neutrophil count jumped from 126 to 603, with thousands more monocytes on the way!

Her eyes were very obviously less swollen today and the nurse was able to check her pupils again. (They have been too swollen to even open a bit until today)

Her sodium is remaining completely stable despite the large amount of fluids going in and out of her body.

She is coughing and not staying totally dependent on Respiratory therapy to remove the junk from her lungs, the coughing motion is also great for her lungs getting back in shape.

She has required considerably less pain medicine and remained comfortable.

She is moving her arms and legs quite a bit, but remaining peaceful all the while.

Her PICC line is in, and her central venous line is out (which is good because the venous line has a high infection risk if left in too long)

She had Physical therapy today to help her legs and hips and arms and she remained peaceful throughout.
Her vitals have been flawless all day.

Her breathing tube sprung a small leak tonight which is often a sign of decreased swelling!

As you can see, we’ve had much to be thankful for today. They told us it will be close to another week before we see any major difference in her swelling because it comes off slowly, but I was so pleased with how her eyes looked already. Her immune system is coming back beautifully and we feel very expectant about the changes we will continue to see in her this week.

Her hands and feet look horrible, to be quite honest, but they will heal in time and we are so thankful for that. The blisters on her feet have popped and her skin is laid open in areas, they are still swollen and black and blue on the soles, but the color on top is much better and it is obvious that her blood cells are getting to work there. Her palms are really incredible, both are extremely swollen, but she has a golf ball size blister on her left hand that almost appears as if she is actually holding something, it is so huge. They expect it to pop or reabsorb, but I have never seen anything like it.

She is being seen by wound care and dermatology for her hands and feet and will require a considerable amount of healing before she is able to walk or use her hands again. We will have to be meticulous about keeping infection at bay through that process. We haven’t been able to discuss with our oncologist what the plan will be from here as far as chemo, but we have some opinions and are more than a little relieved she will get a break from all the nasty drugs for a while as she heals. She will need her immune system to heal these hands and feet and recover from the sepsis.

It’s been a good day, with little milestones that mean a whole lot right now. My prayer is that each day this week will bring with it evidence of healing and that I will get to see my Phoebe’s eyes very soon!

9:18 am:

Her “Advanced Neutrophil Count” is over 100 today! Yesterday it was 26. It should continue to double and triple these next few days! We would like to see it at around 1800 or higher. Phoebe is starting to pee off all of her fluids! They had to give her 2 extra doses of her ddavp last night to balance her out with all the fluid loss. This is great news! They also said that it will take several days to see the swelling come down even with all this fluid loss because they can’t allow her to lose the fluid too quickly because it creates metabolic and electrolyte issues.

But, this is the beginning! I feel so full of hope this morning. Her immune system is working it’s way back! They will also give her a shot this morning to help her bowels. Often the bowels will stop moving if the body has been on pain meds for an extended period of time and this is the case with Phoebe. The shot will help with that. Thank you all for praying and I hope this good news encourages you all as you head to church this morning! I know we still have some waiting to do, but it feels like we are getting somewhere now.

PS.  I do not mind at all the e-mails I receive with ideas regarding Phoebe’s care. They have all been very loving, concerned, gentle and not imposing one bit, so please do not get the impression that people are pushing their opinions on us. We are surrounded by an incredible group of people praying for Phoebe and we appreciate the correspondence.

Here’s to a great day!

7:22 pm:

Phoebe has had a good day. Nathan’s Mom spent last night with her and I enjoyed a night at home in my own bed. A half hour of boy snuggles in my bed this morning was the perfect way to wake up. They all piled in and we talked about Phoebe. Averic said he had a dream that Phoebe woke up and when he woke up this morning he missed her so much he cried. Poor baby. They all miss her a lot right now. We haven’t really “seen” Phoebe since February 17th and we feel her absence in our lives.

She is still swollen today and I can’t see any noticeable difference as far the fluid loss goes. She has gotten rid of a lot of fluid and her output is greater than her input which is really good. I just wish I could visibly see the fluid reduction in her body. She is on 3 different diuretics and as the immune system continues to ramp up she should start pulling off even more fluid. This is the waiting game and the doctors are guardedly optimistic although it feels really exciting to us. My enthusiasm is easily tempered by the doctors, and I wish I could just feel relieved without that nagging worry that they know something I don’t know.

All that to say, we have lots of waiting ahead of us. Waiting for more neutrophils, waiting for the golf-ball sized blisters on her hand to pop so they can start to heal, waiting for the fluid to slowly make it’s way out of her body, waiting for her to be ready to have the ventilator removed….lots of waiting.

Thank you for waiting with us. It’s been an encouraging day and we are looking forward to many more of those!

5:12 pm:

We are still treading water and waiting for her immune system. Phoebe’s neutrophil # was down this morning, but they said that is to be expected as her immune system tries to “re-boot”. The ANC (Advanced Neutrophil Count) # will fluctuate up and down a bit until it eventually starts doubling and tripling in the next few days. Her monocyte # was higher today which is great because monocytes are baby neutrophils. Today a monocyte, tomorrow a neutrophil! Hey, that’s another good t-shirt idea.

phoebes feet

Phoebe’s hands and feet are still extremely swollen and hot, black and blue and weeping fluid as the sores open up. She has Methotrexate toxicity, which means that the drug they inject into her spinal fluid burned her hands and feet from the inside out. It is also likely the reason that Phoebe was so somnolent and “out of it” the week after she received the Methotrexate injection. I am praying that she is awake and REALLY awake when she is weaned from sedation. Her chemo is delayed obviously and there will be discussion about the removal of this drug from her plan. Our oncologist has never seen this type of poisoning and his fellow oncologist who has been doing this for 25 years has only seen it once. It is EXTREMELY rare. Leave it to Phoebe to be unique yet again.

She appears to be a little less swollen today in her arms and legs and they have upped her dosage for the Lasix drug that helps remove water from her body. The Lasix can only do so much until the water in her body cavities is drawn back into her vascular system and that can only happen with her immune system doing it’s job. Yesterday they started back her ng tube feeds at a very tiny amount and will try to increase it little by little so that they can increase her calories and hopefully take her off the TPN IV nutrition. Please pray this goes well, it usually takes some time for the stomach to adjust to food after it has been a while and it often causes her pain. They are also starting laxatives, so I’m nervous about her tummy cramping up and her being uncomfortable without the real ability to communicate that to us.

Her lungs are very smushed up in her chest right now because her abdomen is so full of fluid and it is making it hard for her to breath deeply like she needs to in order to keep her lungs healthy. She can’t come out of sedation and off the breathing tube until she can breathe well on her own. The fluid just needs to go. Period. The immune system needs to get on the job.

I am wondering if Phoebe just doesn’t need the spinal/intrathecal chemotherapy injections and if maybe this is God’s way of showing us that. She is supposed to have an Omaya port surgically placed in her head for her to receive Methotrexate directly to her brain. That now seems totally out of the question in my opinion and had this not occurred with her hands and feet we would have gone ahead with it, possibly doing permanent damage. I believe that God will guide us each step of the way and make known to us how we are to proceed and what changes need to be made. And, if at any time we feel led to change Phoebe’s treatment plan, we will do that.

Quitting chemo altogether is not an option. We actually discussed with the Oncologists prior to Phoebe’s treatment a hypothetical situation, we asked them “What would you do if we said that we believe  Phoebe is healed now since her tumor is gone and we just want to take her home and not do chemo?” They told us that they would take it to court. If she had a %10 percent chance of survival, then they would let us take her home, but because her protocol has a %50 success rate in the treatment of her cancer, they would take it to court.

Now, this was a friendly conversation, because we were not indeed planning on skipping chemo, we were just curious what they did when such situations arose. We could of course move her treatment to another hospital etc. and make changes to her plan, but the cancer will be treated one way or another. Because of this, I believe that if God desires to heal her instantaneously, He will make obvious to the doctors and to us that she is healed and we will see a miracle unfold. He will not “keep us in the dark” and putting her through chemo needlessly.

I address this here, because I have received several very concerned (and rightly so) and loving e-mails about discontinuing chemo the past few days. I understand your thoughts completely. It is horrible to watch my little girl suffer like this, but now maybe you have a better understanding of our situation. Please continue to pray for Phoebe to pull out of this. Never have I physically hurt for one of my children like this..it is overwhelming.

The boys are doing well and many people are reaching out to us and to them. We have truly been taken care of. Thank you to all of you who have sent blankets and prayer shawls and care packages and kind cards and e-mails. You bless us!

6:19 pm-Transfusions and Diuretics:

I just wanted to respond to the post suggesting that Phoebe needed a blood transfusion and diuretics days ago, and say that she has been receiving both for several days. Thank you for the advice. I try to be as detailed as possible in my posts, but inevitably, I leave out certain details. Phoebe has continued to swell in spite of the diuretics and has received several transfusions as is usual when she is neutropenic.

10:39 am-Neutrophils are on the scene!! White blood counts making a come back today:

Why are NEUTROPHILS so important? I looked up the answer:

Neutrophils are the most common type of white  blood cell, comprising about 50-70% of all white blood cells.  Neutrophils are the first immune cells to arrive  at a site of infection.

Neutrophils are  plentiful and responsible for the bulk of an immune  response.  They are the main component of pus and responsible  for its whitish color.  Neutrophils are present in the bloodstream until signaled to a site of infection by chemical cues in the body.  They are fast acting, arriving at the site of infection within an hour.

Before ingesting invasive bacteria, neutrophils can release a net of  fibers called a neutrophil extracellular trap (NET), which serves to  trap and kill microbes outside of the cell.  When neutrophils ingest  microbes, they release a number of proteins in primary, secondary, and  tertiary granules that help kill the bacteria.  They also release  superoxide, which becomes converted into hypochlorous acid, or chlorine  bleach, which is theorized to play a part in killing microbes as well.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
WE LOVE NEUTROPHILS! I think I am going to have a t-shirt made with that phrase on it. Then, anyone who has ever been a chemo patient will be able to pick us out in a crowd!

Phoebe had a pretty good night. We had some issues with her vent settings but got those squared away fairly quickly. Her hands and feet are very concerning, black and blue and extremely swollen. She has some new blisters on her feet today and the black and blue marks have started on her hands as well. Dermatology just came to look her over and they will be back to consult with us more about her this afternoon. I am praying that her white blood cell counts will cure it all and we will start see an improvement quickly in her hands and feet. Still, no one seems to understand what they are seeing when they look her over which is disconcerting.

So, it’s another mixed bag kind of day. Immune system revving up, is fabulous, hands and feet markedly worse, is a disappointment. Thank you all for your kind words and encouragement in the guest book, and for praying for Phoebe’s come back!

2:08 pm-Prayer Needed:

It’s been a rough day..

We have had a rapid heart rate deceleration episode that brought the whole team in to get her heart rate back up. They tried again to get a Picc line on her today, it failed, AGAIN. A PICC line, is an IV line that goes near her heart in one of her main arteries similar to her port. They have to have a lot of IV access to her since she is receiving so many fluids and meds.

She has IV’s in her groin and both hands and the half-started picc line in her arm as well as her port. Her feet have large blisters on them now that are weeping fluid and her hands are getting the black and blue marks. Her whole body is full of fluid, you can’t see her neck. Her eyelids cannot be opened they are so swollen. They are saying that her feet and hand issues are a result of her chemotherapy which is preferable to the alternative, that she was growing black bacteria or fungus.

She really needs fluid off her body quickly, her edema is getting to the dangerous point and weeping tissue is not good right now because open skin means more opportunity for infection. Please pray…she doesn’t look good and it makes me anxious. She needs her immune system in full force and quick. The doctors have said we are just treading water until she recovers her immune system and that needs to happen before the edema gets worse.
Thank you all for praying,

5:32 am:

Correction: Phoebe’s lungs are not collapsed, rather she has “small lung fills” because of the immense amount of fluid taking up space in her body. Sorry about that. Someone yesterday used the word “collapsed”, but apparently that was too strong of a word.

This morning she is receiving a transfusion to bring up her hemoglobin, platelets and hematocrits so she will have some help until her body starts producing more. She has had a peaceful night and her screen numbers look good, her body just needs to start producing those cells on it’s own. Please continue to pray for that until we see change.

2:16 pm-No white blood cells. No neutraphils. Boo:

I’m not sure if I have mentioned Phoebe’s feet yet in any of my posts, but please pray for her little feet. They are extremely hot, swollen, red, taut, and have petachie on the bottom.

petechiae /pɨˈtiːkɪ.iː/) is a small  (1-2mm) red or purple spot on the body, caused by a minor hemorrhage (broken capillaryblood vessels).[1]

This morning the bottoms of her feet were also covered with broken capillaries and black and blue. They say they have never seen it before from chemo and are not sure what it is. Her hands are hot, red and swollen as well. They expect that when her immune system comes back, the problem will correct itself. More waiting. Poor baby, her feet look terrible and I can’t find a picture on the internet that comes close to what they look like right now.

The numbers on her screen look great; she is breathing comfortably with some help from her tube. They went down quite a bit on her settings and she has tolerated that very well. Her heart rate is excellent, 110 as I write. Blood pressure 100/64, breaths per minute, 39, oxygen 96. She is comfortable and riding out the storm peacefully. I just wish those screen numbers translated into an awake, breathing on her own, regulating her blood pressure – Phoebe.

Today they are taking out her central line to prevent infection and adding a picc line since her port line has moved over and up towards her neck. They will have to repair the port at some point, but not now. A picc line, I am told, can last a long time as well. The procedure takes an hour. They have been giving her a blood transfusion and platelets in order to get her ready to tolerate it.

All that to say, a lot more waiting for white blood cells and neutraphils around here. Next test for those will be at 4 am. Sorry I scared you with my 5 am post, lol! Day is night and night is day here in the ICU, and it didn’t even occur to me that I might wake you from your sleep and alarm you with an update at such an hour. I’ll try not to do that again! 🙂