Monthly Archives: February 2012

Her Hair is Falling Out (Feb. 8th, 2012)

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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.

Hold Down The Fort (Feb. 7th, 2012)

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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.

 

Isaiah 43:2 (Feb. 6th, 2012)

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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..

 

Phoebe Needs Prayer Today (Feb. 5th, 2012)

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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..

It’s a Mixed Bag (Jan. 4th, 2012)

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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..

Friday Update (Feb. 3rd, 2012)

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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..

Feeding Tube and Homeschool (Feb. 2nd, 2012)

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2:36 pm:

I just wanted to post a short update to let everyone know that Phoebe got a feeding tube today. This is just a tube that goes down her nose and throat and into her stomach. This will help with taking her meds and eating and drinking since she is not really fond of any of those things right now.

What I’m learning about the chemotherapy meds is that you feel the effects for several days after receiving them and the cbc numbers usually make a dive between 7 and 10 days after chemo treatment. So, her nausea and not wanting to eat or drink are not so abnormal. I just can’t imagine not feeling thirsty after having nothing to drink for so long. They of course have been making up for her lack of thirst with IV fluids and now we will hydrate her through the feeding tube if she refuses to drink. They will also give us a formula that goes into her tube for food. Poor baby.

Some of you have asked for our personal address to send mail and if you e-mail me at hosea214@yahoo.com I will e-mail you back with that information.

Others have asked about the boys schooling during this time so I wanted to address that here as well. We have been home educators from the start with our boys and Nathan has filled in for me when I was teaching in a YWAM school or out of town or attending School of The Bible classes on our missions base in Mexico. We both enjoy teaching our children and it is just the way we have always done life with them. Nathan has been granted a sabbatical during this time that Phoebe is going through her intense chemo protocol and we are sharing the privilege of teaching the boys.

We will continue to home school during this season as we feel that it is how God has directed our family to educate. Our boys are doing much better now that they have a consistent daily school routine and have either Nathan or myself with them all of the time. When family members stay with Phoebe we are both with the boys and that is always nice.

In other news, if Phoebe does well with her feeding tube and is stable, they will let her go home this weekend!! Please pray that she would respond well to the tube and the formula and drinking. I don’t know how it all works just yet, but like everything else, we will learn. Having everyone under the same roof will be the most amazing feeling!

Thank you all for praying and hoping and believing with us! One day Phoebe will get to read all of the beautiful thoughts and prayers in her guest book and marvel that so many people were on Team Phoebe.

10:38 pm-Good News!

Phoebe’s Cerebro-spinal fluid tested negative for cancer cells!!

On Phoebe’s first day of chemotherapy she had what they call “intrathecal” chemo which is where they remove some of the CS fluid and replace it with chemo meds. The fluid they removed had been making it’s way through her brain and spine for the past 3 weeks without any chemo treatment. It passed right through her tumor site and yet it showed NO EVIDENCE of cancer cells!!

This was excellent news to hear! For now it means that Phoebe will not receive another lumbar puncture and intrathecal chemotherapy tomorrow morning, she will only receive her IV chemo. It also means that the nasty stuff is not traveling to her spine where it could cause more tumors.

It does not mean that Phoebe is totally healed. If Phoebe was totally healed she would not have the Diabetes Insipidus or the central fever that she is still having from time to time. If the cancer was gone, that healing would have to manifest itself in an obvious way because as far as I know with AT/RT cancer the only way to determine if the cancer is gone is to have a clean MRI with no tumor growth over a long period of time.

We are rejoicing to hear that the cancer is not traveling through her CS fluid! This is excellent news! Thank you all for praying for our girl. God is taking such good care of her (and us). I know this is part of the roller coaster and tomorrow could be a tough day, but for this moment we are smiling and at rest.

Still no news of when we might go home. Phoebe spiked a fever today and that does not bode well for home-going. It is likely a central fever, but they will culture her to be sure. She seems to be tolerating her feeding tube well so far, and I know she doesn’t miss taking her meds by mouth. A couple of our friends are coming tomorrow to give our house a good thorough cleaning and disinfecting just in case Phoebe gets released to come home this weekend.

We are beyond blessed by our friends and family and even complete strangers who are sending us cards, making home-cooked meals for our family and praying for us. Thank you…everyone.

All our gratitude,  Amey