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

Most of Phoebe's hair came out while I brushed it.

11:10 am:

Yesterday evening while Phoebe was asleep, I got the comb and started brushing her hair. The room was peaceful and the lights dim, the star machine that projects the galaxy on the ceiling splayed a thousand green stars across the darkened room. It came out easily, her hair, in soft clumps that pulled away as I gently combed. She didn’t even wake up. I turned her head and continued on until a huge nest of hair sat beside me on the sheets. All that was left was a thin layer of soft strands. Nathan came up to the hospital to take pictures and I cut the rest short so that it would not get tangled in her face tape and ng tube as it has been for most of the day. I think the rest will fall out today or tomorrow.

She looks like a chemo patient now and that was difficult. But I didn’t cry. She was sitting up playing with toys and enjoying Daddy blowing bubbles while I cut her hair and I didn’t want her to see me sad.

She had a rough beginning to her night last night, with almost 3 hours of pretty intense pain from her open sores on her bottom. Dr. Bowers said those should heal right up as soon as her immune system kicks back in. I pray so, poor baby is more bothered by her bottom than anything else right now. It took a while for the morphine to trump the pain, but they finally got it under control and she is now on a constant Morphine  drip. We still have the pump as well so when she seems to be really struggling with pain we can push the button to give her an extra dose.

Deacon is still sick and it looks like the other boys are coming down with it as well which means they can’t come to the hospital. This week when Nathan and I trade posts at the hospital, I have to call him when I pull up to the front of the hospital, he has a nurse stay in the room with Phoebe and he meets me at the van to take the boys and I go up to her room. They won’t let you past the front desk with a cough or runny nose which is great, but it has taken some creative logistics on our part.

Nathan’s parents come today for four days and that will be a big help. We have had a lot of help and feel really taken care of. The only thing that no one can help with is the intensity of life at the hospital right now. As soon as I walk into her hospital room after sleeping the night at home, I feel the stress descend upon me like a cloak. I am fixed upon screens with all her numbers; heart rate, oxygen levels. I am consumed with sodium levels and always waiting for the next report, thinking maybe I can prevent disaster.

We are really hanging our hats on seeing an improvement in her overall well being this weekend. She needs a break from hurting. Please pray for the neutrophil levels to leap back up and for her sores to heal. We are encouraged that today she continues to snack and drink by mouth, that is a good sign!

11:35 am:

Her hair is falling out. Her bed is covered with sweet little blonde hairs and the hair on her head resembles a bird’s nest. I will cut some of it today to save and then I will wash it and see what happens. I can’t imagine Phoebe without her curls, but I do know she will be cute, even bald.

Last night was the first night I did not sleep at all in the hospital. Phoebe was sleeping peacefully because she got a morphine pump that allows me to push a button and give her morphine whenever she moans or is in pain. It will not allow you to overdose your child, so that option was nice and afforded Phoebe a great, relatively pain free night of sleep.

I however, was up tracking sodium levels and fluid intake all night and bothering the poor nurse because Phoebe’s sodium was all over the place. If her sodium drops too fast she can seize like she did twice in the ICU, if it goes too high, she can have a stroke, so I am a little obsessive about sodium levels. The first 30 minute long seizure she had in ICU is something I never want to witness again.

She received her DDAVP shot last night at midnight. It is supposed to last for 12 hours until she “breaks through” and starts dumping all of the fluid her body has been retaining. At this point she gets another shot. When the night began her sodium was 147, which we were pleased about because she was climbing back down from the high 163 a few days ago. 135-140 is the goal. Her next sodium came back at 154, grrrr. At 4 am she started breaking through and had four full diapers within 45 minutes. She usually doesn’t urinate at all while the DDAVP is in effect, so I chased down the nurse and we discussed why it was happening, to no conclusion. The dr was surprised too.

So, then of course I had to keep an eyeball on her for fear that she would make another giant leap in sodium. They tested her urine and found that she was releasing salt as well as water which is what normal people do, so they just kept an eye on her. I could not sleep though, and when she would wake up with pain (usually from the open sores on her bottom) I would check her speech and lucidity to see if she was still “with it”, hoping to detect if there was any change in her sodium.

Finally, around 6:30 she started asking for milk and juice! She was recognizing her need for fluids which is great. I gave her some milk and juice (the first fluids she’s had by mouth for about a week) and a couple of Goldfish crackers. At 7:30 they gave her the next DDAVP shot. We are now at 156. They still can’t explain why she continues to climb in sodium in spite of added fluids and a higher DDAVP dose. But, they can’t just load her up with fluids because she will then make a sudden drop that could throw her into seizure. It’s very frustrating, because high sodium really makes her feel crummy.

So, that was my crazy night. The great part is, I got to watch my Phoebe sleep all night. I got to snuggle her when she said “sleep wif me Mom.”, and pray her to sleep when she told me her bottom hurt. Praying always lulls her to sleep, I love that.
Today I’m feeling thankful that our friend Amanda Henninger and Nathan took some good pictures of her last week when she was feeling better and her hair was nice and clean. Our nurse today said “I’m finally starting to understand Phoebish.” I loved that, we now have coined a term for Phoebe’s cute form of language; “Phoebish”.

Hopefully I’ll get an opportunity to update this evening when I am home. Mom is coming to stay tonight with Phoebeliscious.
Thank you for fighting with us and for us! This very moment she is asking for french fries! I am praying that her appetite is coming back.

5:56 pm:

Dr. Bowers told us today to “hold down the fort” until Friday-ish when Phoebe’s immune system is expected to start the upswing.

“Hold down the fort” is the perfect sentiment here because it feels like we are hunkered down, dealing with whatever attack comes next and holding our breath waiting for some relief for our sweet girl. Her heart rate has camped out in the 180″s today and should be in the 110-120″s range. Her breathing is very shallow and fast, possibly a combination of tummy pain and her compromised lung.

Her sodium is 156 which is much too high still. They are having a very difficult time bringing it down and are not sure why, which is disconcerting. We are told quite often that Phoebe obviously did not “read the textbook” when it comes to how Diabetes Insipidus works. She is all over the place with her sodium numbers and it is confounding the medical staff here. Is it not enough that she is one of only 40 children diagnosed with AT/RT cancer in U.S. each year? Now she has to do DI her own way. I think my gray hairs have doubled in the last 38 days.

Her oxygen is better today, and she is tolerating the TINY little bit of formula they are giving her through the ng tube. The plan is to up the cc’s slowly and see if she can tolerate the food. In the meantime she is still receiving IV nutrition as well as lipids.

So, we are hanging in, doing life with chemo. The last several days have been a crash course in what the next several weeks will be like and it is an intense pace. I know many other families have walked this road before us and come out on the other side, and those stories keep me going. I do find however, that I can not read AT/RT blogs of the children who did not survive. I start to hyper-analyze Phoebe’s situation and get fearful and neurotic. It’s not a good place for me to go.

I just have to live in this moment. Enjoy her in this moment, blow bubbles with her, watch Veggie Tales and make her days as fun as they can possibly be while she feels so bad. So, that’s what we’re doing.

I never know how much medical stuff to share on here. I know it’s easy to get bogged down in the medical details, but it helps me keep track of things and it’s good for me to just write it all out.

Thanks you all for praying, your sweet gifts and thoughts and words are a treasure to us.

PS. Averic is still struggling, but I think we’ve been given some direction from the Lord in how to help him, so thank you all for praying for him especially. We feel like we have a better understanding of what’s going on with him.

6:31 pm:

Phoebe’s Daddy is with her tonight and I am at home with our boys. She has had another rough day, and I suppose this is par for the course but it’s still shocking. Chemo is just shocking.

Her tummy pain is still her most consistent complaint and has been from the very beginning before she was even diagnosed. It’s still confusing why we can’t seem to help her in that area. I don’t fully understand it and no one seems to be able to explain it well. She is on Adivan (sp?) and Zofran  and rotates those 2 constantly to help with nausea and she gets Morphine when she is in a lot of pain.

Her sodium is 153 and they are aiming to bring it down slowly which seems to be happening. Her potassium level was low today so she is getting that through her IV as well as some IV nutrition. She pulled out her feeding tube AGAIN today and had to go through the whole horrible ordeal of having it replaced. She started receiving some formula through it but her tummy started swelling and getting hard so they stopped it.

She is not in good enough shape to have surgery to move the port so they are holding off on that until her platelets are in a better place. Her oxygen levels have been fine today which is the good news although we still need to see her lung puff back up. She was able to sit up in her PT chair today for a little while, but did not feel well enough to get up.

I have felt so helpless today being at home where I can’t see her, or help her, I know she has her Daddy..it’s more about me needing to see her with my own eyes and be there if she needs me. I know I can’t be there every night, we usually only get about an hour or 2 of sleep on a night at the hospital, but being home without her just holds an emptiness.

Tonight, I am clinging to this verse that someone posted for me today:

Isaiah 43:2  When you pass through the waters, I will be with you; and  through the rivers, they shall not overwhelm you; when you walk through  fire you shall not be burned, and the flame shall not consume you.

Praying that we will not feel consumed by this fiery trial, and that His strength will be made perfect in our weakness. Praying that my sweet little bug can find relief tonight from her tummy troubles and rest peacefully. Praying that I will have the strength to give these 3 little boys what they need from their Mom.

Thank you all for your kind words and prayers, they speak to us more than you know..

10:24 am:

I forgot to mention in my previous post from last night that Phoebe’s port (in her chest) has moved, not the port itself, but the tube that goes down to the blood vessel by her heart. It is now up in the top left part of her chest. It is still allowing blood to be drawn and for her to receive fluids, but how we noticed is that she started complaining or crying when they would draw blood.

They also had to start standing her up or making her bend over at the waist to get the blood to draw. The x-ray yesterday showed the new location. Surgery team came in today to evaluate it and they will most likely have an internal radiologist try to reposition it manually while she is sedated. They would really prefer to avoid a surgery right now with her fluid level issues and because she is in her post-chemo “dip” with her cbc #’s and it will be more difficult for her to heal.

They gave her the ddavp shot at 10 pm last night even though she never “broke through” and started “dumping” urine. I asked if we could wait and see if she would do it on her own, but they said it was too risky because her sodium was up to 152. I feel like it could have been managed with fluids, but they said no. Today her sodium is 155…still climbing. The interesting thing to note, is that when she was only being given a tiny amount of fluids she started asking for apple juice and milk last night…surprise! That is the first time she has had a regular drink in DAYS and I was so hoping they would let us continue on that route. Now she is getting those fluids by IV. Grrr.

She is pooping a lot today, and now they are concerned that it’s making her lose too much fluid. Catch 22..she needs to get rid of the constipation so she can eat and feel better…she needs to hang on to the fluid so her sodium #’s can go down. It’s a lot of little inter-connected issues and it’s difficult to know how to tweak things..and what to leave alone.

I am having her sit up a lot today to get some pressure off her lung. She had OT this morning and did well. We blew bubbles for a while and she adores that. Now we are waiting to hear from the dr’s about the plan for her port and how they will manage her fluids/sodium.

Meanwhile, Deacon has fever at home and Nathan is taking care of him. I know they are a bit disappointed because they were planning in going to church this morning.

Please pray for wisdom for dr’s regarding the port issue. Pray that Phoebe’s sodium would right itself and we would be in agreement as to how that should be done. Pray that her lung would be restored to health. That her bowels would clear out and tummy pain would end. Please pray for Deacon to get well and that it won’t spread through the family.

Thank you everyone..we need some holding up day.

2:51 pm-Storm The Throne:

Phoebe needs “storm the throne” prayers right now. Her oxygen dropped to 70% and the team had a hard time shaking her out of it. When she falls asleep she breathes so shallow and makes these huge dips in oxygen. They now have her on 100% oxygen nasally and she is still breathing on her own.

Her sodium is still climbing. The last reading was 161 even after receiving the increased fluids that are supposed to bring it down. She got cloudy and distant like she does at this sodium level. Praying it will start going down since the ddavp shot at 2pm.  She needs to be around 140.

She still refuses to eat and they are discussing putting her on IV nutrition rather than the ng tube feedings she was vomiting up repeatedly.

So, it seems she is doing less and less on her own; not urinating, not eating or drinking, now she is not breathing deeply enough. She has also developed a painful sore on her bottom from the loose stool that is having a hard time healing because her white cell counts are appropriately devastated by the chemotherapy.

Lots to pray for today..hoping we have bottomed out and the only way to go is up.

Thank you all for praying with us and for our Phoebe!

8:41 pm-Calm After The Storm:

It was an eventful day to say the least. Phoebe is breathing well on her own now without supplemental oxygen and her sodium is down to 154 from where it ended up at 163. Little bug has been feeling horrible all day in that high sodium range, her speech becomes very difficult to understand and her eyes are half-mast. Hopefully she will steadily drop down to the high 130’s to 140 tonight. This Diabetes Insipidus runs her ragged.

She is receiving respiratory therapy every four hours to help with her lung function. She gave us a big scare today when she dipped and didn’t come right back up. We got her up and moving or at least sitting up as much as we could to take the pressure off that lung, but she was not feeling up to being “up”.

She pulled out her NG tube again (3rd time) and had to get a new one which I think I’ll never watch again. I’m so tired of seeing her hurt. I know she’s tired of hurting. Today we pulled her around the unit in a wagon since she was too weak to walk and when we passed the elevators she pointed to them and said “go bye bye”. She asked me later in the day to “go see Daddy and go bye bye”. She hasn’t been outside since December 31st.

So, Phoebe is officially “neutropenic, which means she is now completely immuno-supressed and has zero white cells to fight infection. She is not allowed to leave the Oncology floor with a count less than 500. This is the chemo bottom and apparently things get better from here as far as cell counts and then they do it again. So far, I’m not liking bottoming-out. I understand what Dr. Bowers meant now when he told us that we would want to quit chemo during this first 12 weeks. If this is only the beginning, yikes. I feel like I will be hanging on by my fingernails humanly speaking.

I know God will give me grace for those moments, but they still hurt. I pray that Phoebe has a ten fold measure of grace and that He whispers to her in her darkest, most confusing times. She is doing so well, still being so polite to the nurses when they do painful procedures like change her port needle and saying “thank you”. She is being so brave, I am so proud of her.

She needs to eat, and drink. If only I could explain that the tube she hates so much taped to her face would come out if she would just eat. Please pray for that. Not sure when they will reposition her port, they want to get her sodium and lung under control first. That’s all I know for now. Praying for a peaceful night for our girl..

5:48 pm:

Phoebe had a good day today. Nathan posted quite a few pictures of her on face book and he tried to post them to Caring Bridge, but the files were too large. She is still trying to adjust to the feeding tube formula feedings. She must be able to tolerate 30 cc’s every hour without vomiting before she can be released to come home. She is still able to eat regular food and drink fluids by mouth with the feeding tube in, but she is only taking a few bites at a time and not wanting to drink anything.

She had her “outpatient” chemo today even though she is still in-patient. She got a dose of Vincristine through her port this evening. This is the drug that is responsible for  hair-loss in chemo patients. I have noticed that her hair is thinning in some areas, but haven’t experienced any big tufts coming out yet. She looks great, and she asked to go on a walk twice today which brings me so much joy. She is getting some of her energy back and that is supposed to improve even more once she really starts responding to her nutritional needs being met.

Tonight I’m asking for prayer for Averic, our 7 year old son. He tends to be our child most effected by change or loss and I just think he is struggling. Averic is the only one who cried last year when we told our boys we had lost the baby we were expecting. I miscarried at 12 weeks and then at 9 weeks just 4 months later. He is also our boy who asks the most questions about Phoebe’s health and when she’ll come home and how come God just doesn’t heal her right now? I know all of the boys are really missing Phoebe, they say so, but tonight, would you pray for Averic? He has a storm inside right now that needs quieting and I am finding I have to remind myself that his behavior is reflecting something deeper going on.

Today Nathan and I got to spend some time together with the boys and that was nice. We are looking forward to more time together tomorrow before we head back to the hospital and I am on Phoebe duty. Phoebe is with her Mammaw tonight and I am praying they both get some good sleep.

~goodnight all..

10:42 pm:

Phoebe had a good day today. Nathan posted quite a few pictures of her on face book and he tried to post them to Caring Bridge, but the files were too large. She is still trying to adjust to the feeding tube formula feedings. She must be able to tolerate 30 cc’s every hour without vomiting before she can be released to come home. She is still able to eat regular food and drink fluids by mouth with the feeding tube in, but she is only taking a few bites at a time and not wanting to drink anything.

She had her “outpatient” chemo today even though she is still in-patient. She got a dose of Vincristine through her port this evening. This is the drug that is responsible for  hair-loss in chemo patients. I have noticed that her hair is thinning in some areas, but haven’t experienced any big tufts coming out yet. She looks great, and she asked to go on a walk twice today which brings me so much joy. She is getting some of her energy back and that is supposed to improve even more once she really starts responding to her nutritional needs being met.

Tonight I’m asking for prayer for Averic, our 7 year old son. He tends to be our child most effected by change or loss and I just think he is struggling. Averic is the only one who cried last year when we told our boys we had lost the baby we were expecting. I miscarried at 12 weeks and then at 9 weeks just 4 months later. He is also our boy who asks the most questions about Phoebe’s health and when she’ll come home and how come God just doesn’t heal her right now? I know all of the boys are really missing Phoebe, they say so, but tonight, would you pray for Averic? He has a storm inside right now that needs quieting and I am finding I have to remind myself that his behavior is reflecting something deeper going on.

Today Nathan and I got to spend some time together with the boys and that was nice. We are looking forward to more time together tomorrow before we head back to the hospital and I am on Phoebe duty. Phoebe is with her Mammaw tonight and I am praying they both get some good sleep.

~goodnight all..