I haven’t actually seen her today because I am still sick, but Phoebe’s grandmas inform me that she had a good day! She is sitting up, throwing the ball back and forth, turning pages in her book, watching cartoons and “waking up” more, and that news does my heart good.

Her CT scan of her chest and her abdominal ultrasound both came back normal with no sign of infection. Her oncologist says her high white cell count is a result of one of the chemo drugs she received and is not an indicator for infection. He also said that her breathing is improved although it is still labored and he is NOT concerned about tumor growth because the type of breathing she is exhibiting is not consistent with the breathing pattern caused by tumor pressure! THIS made me smile most of all today and allowed me to breathe a sigh of relief.

Phoebe's foot as it heals nicely!

This morning, the wound care people came by and removed the dead skin from Phoebe’s hands and feet and they look amazing. The doctors were impressed with how quickly she healed up and how easy the whole process turned out to be.

Nathan’s Mom pulled a 3 nighter with Phoebe because we have been sick and that is no easy task in the ICU. My Mom is on duty tonight and I am so thankful that Phoebe has such dedicated Grandmothers. I am really missing her and hoping that tomorrow I will be in good shape and ready to stay with my girl.

I’m sorry it has taken so long to get around to posting today. I have been resting, doing school with my boys and getting things in order to go back to the hospital. Thank you all for your encouraging words and posts and e-mails. They have been bright spots in my day and I have drawn strength from them.

This morning when I woke up I felt the Lord impress Psalm 112 on my heart. I’m not familiar with that Psalm by memory, and I was blessed to tears when I read it. It felt like a promise to me…

Praise the LORD.

Blessed are those who fear the LORD,
who find great delight in his commands.

Their CHILDREN WILL BE MIGHTY IN THE LAND;
the generation of the upright will be blessed.
Wealth and riches are in their houses,
and their righteousness endures forever.

EVEN IN DARKNESS light dawns for the upright,
for those who are gracious and compassionate and righteous.
Good will come to those who are generous and lend freely,
who conduct their affairs with justice.

Surely the righteous will never be shaken;
they will be remembered forever.
They will have NO FEAR OF BAD NEWS;
their hearts are steadfast, trusting in the LORD.
Their HEARTS ARE SECURE, they will have NO FEAR;
in the end they will look in triumph on their foes.
They have freely scattered their gifts to the poor,
their righteousness endures forever;
their horn will be lifted high in honor.

The wicked will see and be vexed,
they will gnash their teeth and waste away;
the longings of the wicked will come to nothing.

Amen! He is speaking to me and comforting me and guiding my heart like He guides the path of the waters, directing it and turning it. Hearing from Him this morning changed my entire outlook today and I am grateful for that!

Please pray for her throat to heal from the soreness and from being raw from the tube. Pray for her breathing to regulate and for her to be able to cough in a productive way. Pray that she will meet all of her goals to be able to move back to the oncology floor and out of ICU!

Thanks everyone!

Phoebe has had an emotional day and and so have I. Benjamin came down with fever and vomiting yesterday and then I started getting sick and when I woke up this morning, my throat was swollen, I had no voice and my face felt like it was going to explode. So, I didn’t get to see my girl today and from what I hear she had some weepy spells which in turn made me have some weepy spells not being able to do anything for her. We are a mess.

Ben is feeling better today and Nathan and I are battling this nasty cold or whatever it is. Phoebe has also had a fever today and they are taking more cultures. So far all of her cultures have come back clean, leading them to believe that she is still having some central fever.

Her chest and lungs have been very congested and she has not been able to cough it up the way she needs to because her muscle tone is out of shape and her lung capacity so diminished. They had her sitting up in her physical therapy chair for several hours today in hopes that being more upright would enable her to breathe more deeply and strengthen her lungs.

She is still having a lot of withdrawal symptoms and the weepy spells are all a part of that. She has mouthed “yes” and “no” but still doesn’t have a voice because of the irritation from the ventilator. She also turned the pages on her Grammy’s Nook book tonight to look at a story and that is encouraging.

To be quite honest, one of the doctors in the ICU came into her room a couple of hours after they removed the ventilator, assessed her while she was breathing erratically and her eyes were half mast and distant and stated that he thought the tumor was causing her to be like that and maybe this was her “new normal”. I flipped out. His comments have been the cause of a lot of tears these past 2 days and even though he recanted what he said after he assessed her again later and realized that she had a clear MRI ten days ago, it has left me shaken.

They are now saying that everything she is experiencing is from being on opiate pain killers and sedatives for an extended period of time and having withdrawals. She recognized her brothers today in a picture and whispered their names, so I know she is “there” and that the doctor was off in his assessment, but there is always the underlying fear of the tumor and his words planted a seed that I’ve been trying to dig up for the past 2 days.

I am praying that I wake up feeling better tomorrow. I am so afraid to get her sick on top of all her struggles right now, and yet she needs me and that feels horrible. If her groggy state continues she will have an MRI on Mon or Tues. They are expecting to see her wake up and become more interactive as these drugs leave her system although it will be some time still before she is weaned from the methadone altogether. The other important issue, is that she will start coughing for herself and controlling the secretions in her lungs so that her breathing can become clear and steady. If she clears up her breathing we will get to move back down to the Oncology floor on Tuesday.

Please pray for all the things I mentioned above and for our family to get well so that I can return to my girl.

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.