Saturday, November 30, 2013

Day 39: Terrible Pain

It was a terribly painful day for Krista. It started with a loss of appetite. Appetite isn't quite the right word for it since she said that she wanted to eat; it was just that nothing sounded good. She tried a piece of toast but could only take one bite before sending it back. The meal shake I made tasted strange to her. (Chemo can do strange things to taste buds.) She asked for a hard boiled egg but could only eat a third of it - and eventually threw that up. I bought all manner of soft foods but those weren't going to work yet. It was quite discouraging for her.

Later she had a different kind if pain localized to her stomach. I gave her some Imodium to stop the intestinal flushing that was starting and that seems to have worked. 

But this generalized pain just won't stop. It's kept her in bed all day. Aside from the pain meds she's only been able to take the morning dose of hydrocortisone. There's a cup full of pills she missed because of it. Praying that tomorrow is better.
Be gracious to me, O Lord,
for I am pining away;
Heal me, O Lord,
for my bones are dismayed.
And my soul is greatly dismayed;
But You, O Lord—how long?
Return, O Lord, rescue my soul;
Save me because of Your lovingkindness.
(Psalm 6:2-4)

Friday, November 29, 2013

Day 38: Rushing

My phone ran out of  battery overnight. This is not a typical thing for me since I am usually very diligent to keep it charged between 20 and 80 percent. Last night, however, I accidentally left my charging cable in the car. I had intended to get it early in the morning so my phone could partially charge before breakfast, but I slept in and we needed to get there before the buffet closed. We ate our breakfast and were just about done when the waiter beckoned me to come with him and said that my wife wanted me. I thought he must have had the wrong person, and I explained to him that it couldn't be my wife because she was in the hospital. He laughed and said, "No, she's on the telephone!"  Krista had been trying to call me, because she was being discharged today. It was quite frustrating for her since I wasn't reachable, and somehow she managed to track me down to the breakfast room of the hotel. Krista is a very resourceful woman!

Everything worked out well, though I was a bit rushed all day.  (I think the rest of the world was rushed too, with all the Black Friday activity.) The boys got in a swim while I showered and packed. The hotel was kind enough to cancel our last night's stay without the proper 24-hour notice. I picked up her medicines from two different pharmacies and fed the kids what they were craving 20 minutes away. (Why are there no Chick-Fil-A's in the Pasadena area?)

Krista is at home now, tired and still recovering a bit, but since her medical condition is stable there's no reason to keep her in the hospital. It's good to be home, though there was a rush there also to get the house sanitized again so Krista could avoid having to go back again. I'm looking forward to a good night's rest in my own bed!
Surely everyone goes around like a mere phantom;
in vain they rush about, heaping up wealth
without knowing whose it will finally be.
But now, Lord, what do I look for?
My hope is in you.
(Psalm 39:6-7)

Thursday, November 28, 2013

Day 37: Too Short

Krista's pain problems continued today. That made visits a little difficult. It didn't help that the boys and I didn't sleep well last night. We visited twice, each time for a short spurt. We tried to play games, but between Krista's pain and the boys tiredness thing just weren't working. We took a nap at the hotel and ate dinner out because Krista warned us that the turkey special at the hospital wasn't good. I had a good talk with the boys this evening about compassion from the following verse. 

[Jesus speaking] "But go and learn what this means: ‘I desire compassion, and not sacrifice,’ for I did not come to call the righteous, but sinners."
(Matthew 9:13)

Wednesday, November 27, 2013

Day 36: Recovering

Krista's condition is improving as she recovers at the City of Hope. The lab results have not come back so there haven't been many changes in the technique, which is primarily IV antibiotics.

The oncologist said that if she is able to keep the fever down for 2 days then she can go. They stopped giving her Tylenol earlier today, so the afternoon she had fever-free counts toward her release. I don't know if this will complicate the situation but this evening when we visited her blood pressure was too high. I think it was because of the pain level she was experiencing, but they treated it directly with a blood pressure reducer. Her pain was quite bad but it was too early was to get more pain killer so she was just going to have to wait it out. The pain specialist has been stopping by twice a day, so maybe tomorrow he'll be able to adjust the dose again.

The oncologist also had some good news for after she get discharged. He wants Krista to be able to be more independent in taking care of herself. He clarified that the role of caretaker doesn't have to be a 24/7 presence with her; it just needs to be someone who can be available to help, even a neighbor or a nearby friend. That will make it much easier if we are at home, as I should be able to go into work from time to time. Of course, the best thing would be to stay locally after that but we're still on the waiting list for the Village since it's still booked. The hotel the boys and I are staying at is really nice, newish, and clean. It would be great to keep her here, but it doesn't have cooking facilities. We'll have to see what will work as she gets closer to release.
Cast your cares on the Lord
and he will sustain you;
he will never let
the righteous be shaken.
(Psalm 55:22)

Tuesday, November 26, 2013

Day 35: Back Down

It  wasn't too much longer after I completed the last post that everything changed. Krista woke up at 1 am with a sore throat and a fever. We called the triage nurse at the City of Hope who asked about previous symptoms. They were particularly interested in the vomiting incident yesterday, and in the fever-less chills she felt the same day. Apparently these are all pointers that it's time to have them check her out. We had her in the car by 1:30 am, and almost as soon as she got in she had another instant vomit without warning. She felt a little better afterward and didn't have any incident afterward.  The freeways are amazingly empty at that time of night.  They ran labs on her and we rested a bit -- though rather uncomfortably.

Krista had been experiencing some rashing in the last few days, mainly around the chest and some of the forehead. Overnight, the rash grew to almost all over.  Her legs and forearms were particularly bad, but the chest and forehead were worse than we previously noticed. Oddly the back was not affected. The doctors couldn't detect any immediate signs of infection (though the longer-term growth tests haven't been developed yet). Also her platelets weren't unusually low, so the rash is not likely to be petichia (tiny dots that spontaneously appear when platelets are very low). The most likely guess is that the rash is due to GVHD and perhaps some kind of infection triggered it. They took a skin biopsy to verify, but again, we haven't yet heard the results.

Whatever the results come back as, Krista is going to be staying in the hospital for at least a couple of days - perhaps a week if necessary. This is really sad, as we had hoped to be able to have Thanksgiving together at home. So to make up for it, I got a hotel reservation for me and the boys down there. We'll head down tomorrow and spend a few days. We may not be able to cook but at least we'll be together!
Two are better than one,
because they have a good return for their labor:
If either of them falls down,
one can help the other up.
But pity anyone who falls
and has no one to help them up.
Also, if two lie down together, they will keep warm.
But how can one keep warm alone?
Though one may be overpowered,
two can defend themselves.
A cord of three strands is not quickly broken.
(Ecclesiastes 4:9-12)

Monday, November 25, 2013

Day 34: Hard To Stomach

Today was a rougher day for Krista. She hasn't been feeling very good because of the pain. The pain specialist ordered an increase in her base dose of pain killer, but she has to wait until she goes down for her checkup appointment tomorrow at the City of Hope to pick it up from their pharmacy. I ordered the special "MG plus protein" magnesium supplements (which are supposed to be more easily digested) online because none of the local stores carried anything like it. In the meantime, we gave her some regular magnesium pills which she threw up within 5 minutes. The incident may not have been directly related to the pills, but she hasn't thrown up in a long time so it's a bit suspicious. They'll check her magnesium levels tomorrow and might have to give her a magnesium transfusion. Praying for wisdom for the doctors and safety for the journey.
Remember your word to your servant,
for you have given me hope.
My comfort in my suffering is this:
Your promise preserves my life.
(Psalm 119:49-50)

Sunday, November 24, 2013

Day 33: Two Quick Things

It's late and I have to wake up early tomorrow for meetings, so I need to make this quick. Krista's doing very well, but is experiencing more generalized body pain recently. The pain medicine had been working well until now, but now she's only getting an hour or two of relief ever four hours. She's contacting the pain specialist to find out what can be done about this. Also, we need to get her some magnesium supplements, as one of the medicines she's taking depletes her body of magnesium. There are specific recommendations for the type, so tomorrow we'll start looking where we can get that.
Praise the Lord, my soul;
all my inmost being, praise his holy name.
Praise the Lord, my soul,
and forget not all his benefits—
who forgives all your sins
and heals all your diseases,
who redeems your life from the pit
and crowns you with love and compassion,
who satisfies your desires with good things
so that your youth is renewed like the eagle’s.
(Psalm 103:1-5)

Saturday, November 23, 2013

Day 32: A Walk

Things are still going well. Krista, the boys and I went for a walk in the neighborhood this afternoon. It's amazing how well Krista is walking. We noted that it was so difficult last time due to the whole coma incident. This time is so much simpler. Still she wore the particulate filter on the walk. 

Teach me Your way, O Lord;
I will walk in Your truth;
Unite my heart to fear Your name. 
I will give thanks to You, 
O Lord my God, with all my heart,
And will glorify Your name forever. 
For Your lovingkindness toward me is great,
And You have delivered my soul from the depths of Sheol. 
(Psalm 86:11-13)

Day 31: Welcome Home

Krista made it home today! She had an appointment with the oncologist at the City of Hope this morning. He thought the plan of going home was a good one, given the circumstances, and even said that she had a good medical team in Santa Barbara to deal with emergencies. Not that there's any signs of trouble right now.  Labs looked very stable, except for her magnesium level which it typical to be low due to one of the medicines she is on. That's an easy fix with an IV infusion, though it took some time. Both Krista and my mother got to take a nap while that was going on since they brought a recliner chair into the infusion suite. That's a nice treat before making the drive up to Santa Barbara.

I managed to dust and sanitize the bedroom and bathroom walls before the cleaners showed up. Our house tends to be very dusty, so I've been doing that as an extra precaution when Krista comes home immune suppressed. The cleaners spent two hours with three people prepping the house, and I got a chance to hang up the "Krista's bathroom" sign on the bathroom and the "Wash your hands" sign on the front door. Those have been very helpful for remembering the precautions we need to take.  The boys made a "Welcome Home" sign too and I put that on the garage so it would be the first thing they saw when they got here. I had a lot of errands to do so I wasn't home to see their arrival (boo!). It was a big day for us all, so I'm off to get some much needed rest.
In peace I will lie down and sleep,
for you alone, Lord,
make me dwell in safety.
(Psalm 4:8)

Friday, November 22, 2013

Day 30: Not Working

Krista is doing great with her recovery. She was able to do the full set of exercises that the physical therapist gave her to do for the first time today. That's the good news... the bad news is the hotel. It's a nice hotel for healthy people, but it's just not working for Krista. The doctors gave her some pretty strict requirements:

1) All food has to be cooked and it can't be from a restaurant. The problem is that there's only a 2-burner stove top in the hotel room, and that only works some of the time.

2) Sterilize dishes and pots and pans. The hotel doesn't have a dishwasher.

3) Use a towel only once. The hotel only provides room service once a week. That is way too long to go with the set of towels she has.

4) Live in fairly sterilized conditions. The hotel is very dog friendly; there are dogs in every room around her. That means there were probably dogs in her room. There's partial carpet in her room which probably hasn't been sterilized.

So since the Village isn't available and this was the best choice in the area, Krista and my mother agreed that Krista would be better off back home for now. I agree. We're going to try it out, for the weekend at least, since her oncologist has already said that weekends away was OK.

The main thing they are cautious about is infection. They want to have her get to the City Of Hope hospital as soon as possible if any sign of infection shows up. We've dealt with infections before at Cottage, so that shouldn't be a problem. The doctors always think of the worst case, which would be if something got complicated they would have to transport her between hospitals and that gets complicated. It seems more likely that she would get an infection in that hotel than at home anyway, with they way we've quarantined her bedroom and bathroom.

The other thing the doctors get concerned about is falling. With Krista's mobility being as good as it is, that risk is really reduced. The only danger left would be if she were to experience a blood pressure drop. Her blood pressure has been quite stable, so again that's not a concern. (Besides we have a blood pressure monitor at home that she doesn't have access to at the hotel.)

So tomorrow I will be cleaning instead of driving. My mother will just drive Krista up after her appointments since mom was coming up anyway. That sounds better to me anyway. Cleaning won't be too hard since MasterCare was already scheduled to come and do a house claning. I just have to make sure it's all picked up for them, and do some of the extra sanitizing that makes it extra safe for the immune suppressed.
The Lord is gracious and righteous;
our God is full of compassion.
The Lord protects the unwary;
when I was brought low, he saved me.
Return to your rest, my soul,
for the Lord has been good to you.
(Psalm 116:5-7)

Wednesday, November 20, 2013

Day 29: Moving Day

Krista and Jan made the move today into the hotel. It sounds like it went pretty well. The room is nice, though the air conditioner is very close to one side of the bed. The doctors phoned in all the new prescriptions into the local CVS, but apparently that is about 6 miles away from the hotel. My mother went to pick up the new prescriptions and got to enjoy the greater Los Angeles freeway system at rush hour. It wasn't even raining (like it is here in Santa Barbara) and there were three accidents on the way! The storm that's hitting here right now is on it's way south, so be ready for people to forget how to drive. (That's one of the strange realities of living in Southern California.) Thanks mom for helping with all that today!
Sing to the Lord with grateful praise;
make music to our God on the harp.
He covers the sky with clouds; he supplies the earth with rain
and makes grass grow on the hills.
He provides food for the cattle and for the young ravens when they call.
His pleasure is not in the strength of the horse, nor his delight in the legs of the warrior;
the Lord delights in those who fear him, who put their hope in his unfailing love.
(Psalm 147:7-11)

Tuesday, November 19, 2013

Day 28: Different

It looks like the plan is going to be different than we had originally hoped it would be. Krista is supposed to be discharged tomorrow but, while there is no availability at the Village, she's not going home just yet. We got her a room in a nearby extended-stay hotel for a couple of nights. We're still on the waiting list for the Village, so if something opens up we'll be able to move her there.

My mother is coming back up from San Diego to stay with Krista two nights, and then Friday I'll head down there and she'll come up to Santa Barbara to stay with the boys until Wednesday. Krista only has one change of clothes with her, so I'll be bringing her a bunch of supplies. I understand that the hotel doesn't have many cooking tools, so those will be with me too. And don't forget the cleaning supplies.

Once she's out, she'll be free to roam about (with a N95 particulate filter mask on). Got to keep those germs out! No crowds or retail stores allowed. (Krista wondered if the restriction includes discount stores, too -- ha!) The doctors will also allow her to go home for Thanksgiving, so we're very excited to be able to spend the holiday together at home. She's been picking up some great tips for making Thanksgiving preparations easier from the Food Network, so we'll have the kids pitch in and make a mini feast.

All of this is so amazing and I'm so grateful that God spared us an experience like we had last time. I keep thinking that she should be incapacitated coming out, but she's doing well - just weaker than usual. That strength will come back in time; I expect months, but we may be surprised.
You turned my wailing into dancing;
you removed my sackcloth and clothed me with joy,
that my heart may sing your praises and not be silent.
Lord my God, I will praise you forever.
(Psalm 30:11-12)

Monday, November 18, 2013

Day 27: No Strings Attached

I am back home still, attending training classes at work. While I'm here I'm trying to get as much done as I can, so today and tomorrow it's auto maintenance. Our mechanic is half-way between home and work, so I bring my bike on the car and bike the rest of the way in. Normally I can do that casually, but today it was a bit rushed since our training starts at 8 am! One more time tomorrow.

Krista is now completely off the IVs, not even the nutritional drip remains. They are still adjusting some of the oral medicines to get them right. It's possible that she could be discharged tomorrow, but only if they get an opening at the Village. There's just too much going on right now for them to discharge her otherwise.

On the fun side, Krista got a ukulele from the music therapy group recently but it was badly out of tune. I would have tuned it for her, but that wasn't an option. Somehow, she figured out how to use the tuner and did it herself! Now she's itching to learn how to play it. The music therapy group meets at the Village with free ukulele lessons, so maybe that will work out soon.
[Jesus speaking] “I feel compassion for the people because they have remained with Me now three days and have nothing to eat. If I send them away hungry to their homes, they will faint on the way; and some of them have come from a great distance.” And His disciples answered Him, “Where will anyone be able to find enough bread here in this desolate place to satisfy these people?” And He was asking them, “How many loaves do you have?” And they said, “Seven.” And He directed the people to sit down on the ground; and taking the seven loaves, He gave thanks and broke them, and started giving them to His disciples to serve to them, and they served them to the people. They also had a few small fish; and after He had blessed them, He ordered these to be served as well. And they ate and were satisfied; and they picked up seven large baskets full of what was left over of the broken pieces.
(Mark 8:2-8)

Day 26: Later

I'm writing this post a a bit later than usual because yesterday was too busy for me to write. I spent the day in church, having some quality time with my boys, and doing chores. Krista felt quite well yesterday, and she's off all the IV's except for TPN at night. She said that she was less sleepy and less pained. No news otherwise. We're waiting  to hear today what the oncologist has to say about discharge and availability at the Village.
Do not worry then, saying, ‘What will we eat?’ or ‘What will we drink?’ or ‘What will we wear for clothing?’ For the Gentiles eagerly seek all these things; for your heavenly Father knows that you need all these things. But seek first His kingdom and His righteousness, and all these things will be added to you.
“So do not worry about tomorrow; for tomorrow will care for itself. Each day has enough trouble of its own.
(Matthew 6:31-33)

Saturday, November 16, 2013

Day 25: Day Off

Today was a day off of sorts for me. I got to sleep in, have meals with the kids, and even go to the beach with Trevor and his friend Dillon. I've never been to Rincon Point before, and it is amazing that as soon as we got there I saw someone I knew! Rincon is a dog-friendly beach, so we brought our dog along and let him run around and get all sandy and wet. It's bath time for him anyway. Tonight we had Dillon and Adam's friend, Garrett, over also and they watched some movies.

Krista didn't have so much excitement. Her red counts came down quite a bit (from 9.4 yesterday to 8.5 today), so she got a double transfusion. (White also went down a bit to 8.2 which is still perfectly normal; platelets are nice and stable at 66k.) She learned today that the incredible boost she had been experiencing may have been from residual Neupogen in the stem-cell donation. They give Neupogen to the donor to increase production of stem-cells, but it also is known to increase production of white blood cells. The pattern of rapid increase followed by a small reduction is expected when Neupogen is introduced.

Aside from the labs, she began experiencing more all-over skin pain recently. The new pain killer had been helping with that, but they replaced her constant IV dose with a sticky patch that's supposed to do the same thing. (The PCA, where she can give herself extra doses every so often, is still there for when it gets bad.) It sounds like they might need to adjust the patch some more, as dealing with this made her sleepy and unmotivated to do her laps around the building. Praying for a better tomorrow.
Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently. In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
(Romans 8:24-27)

Day 24: Waiting

Krista continues to be doing well with her recovery. Her white counts are still at the high range of normal (9.4) and her platelets and red counts are stable. The reduction of IV nutrition is matched well with her eating abilities - today she discovered another off-the-menu item she can eat: hard-boiled egg. She seemed a little more tried today than yesterday, and she did sleep a lot. I spoke with her tonight and she felt like she needed a break after the physical exertion yesterday. She still got a shower and took a walk today on her own. That's going to make it so much easier than last time when she gets out.

We talked to the nurse coordinator today about arrangements after discharge. We verified that she will need to stay local to the hospital for a time after discharge, but at the moment there are no openings in the cottages at the Village. Boo! Krista just loves the way they do things at the City of Hope (tonight she said, "I can truly say that I love this place"), and it would be so disappointing not to be able to take regular walks on their beautiful grounds. We are on the waiting list so pray for an opening soon!

I drove home to spend some time with the boys this weekend. It's so wonderful all the experiences they get to have, and for my mother being able to stay with them the last couple of weeks. She's gone back down to Carlsbad to take care of some things for a time and then will come back. What a huge help that is; thanks Mom! I'll end tonight reflecting on God's provision for the situations He leads us into.
As for God, his way is perfect:
The Lord’s word is flawless;
he shields all who take refuge in him.
For who is God besides the Lord?
And who is the Rock except our God?
It is God who arms me with strength
and keeps my way secure.
He makes my feet like the feet of a deer;
he causes me to stand on the heights.
He trains my hands for battle;
my arms can bend a bow of bronze.
You make your saving help my shield,
and your right hand sustains me;
your help has made me great.
You provide a broad path for my feet,
so that my ankles do not give way.
(Psalm 18:30-36)

Thursday, November 14, 2013

Day 23: Change Of Plans

Krista had another really good day today. I had a bunch of errands to do today (including getting her phone fixed -- thanks Eric!), so I wasn't around to witness some of it. She walked around, did physical therapy and music therapy. She's eating more of her food now, so they are able to have her on the nutrition drip only during the day. All in all, she's doing so well that she says she doesn't need my help right now. She's sending me home tomorrow!

The doctors are not going to discharge her this weekend, but we're going to shoot for discharge next Friday. That will just work out better for everyone. I think it's important for me to be there for it, because they have all these doctors come in on the day of discharge and give instructions. The daily pharmacy list is quite overwhelming, and she's going to need help creating a way of tracking when to take what. We tried a number of different approaches last time and I think that the chart I put together ended up working well for her. Another rule they have once she goes outside is that they want her to minimize her contact with people for a while to prevent exposure to viruses particularly. So she'll spend the next week in the nice clean hospital getting stronger and having them keep a close eye out for GVHD.

Krista had to cut her physical therapy session short because they were working on arms and there's a suspicious painful hardening on her lower arm that zapped her when she extends in a particular way during the exercise. We've heard from others who have had stem-cell transplants that hardening like that is sometimes an effect of GVHD. She's been showing the nurses and they all say to show the oncologist tomorrow. It's not too bad right now but, if it is GVHD, we're hoping it doesn't get worse because that particular kind can lead to some debilitating problems with the arms and hands. We'll let you know what they say tomorrow.
Teach me your way, Lord;
lead me in a straight path
because of my oppressors.
Do not turn me over to the desire of my foes,
for false witnesses rise up against me,
spouting malicious accusations.
I remain confident of this:
I will see the goodness of the Lord
in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord.
(Psalm 27:11-14)

Wednesday, November 13, 2013

Day 22: Pressing On

Just a short update tonight since I have an early morning meeting and need to get to bed.... Krista's white blood count up to an incredible 9.4 today! Since the normal range is 4.0 to 10.0, we asked if they were concerned that the count might be too much. So far, there's no concern -- it's just good news.

Krista continues to do very well on the new pain killer. There was a vomiting incident today, but it was not the suffering kind. It came out of the blue without warning and afterward the nausea was helped by the anti-nausea meds. Otherwise, she's been eating better and holding it down.

No new word on discharge. I'm going to call the case manager tomorrow to see if we can get any more information about what it would be like. We ran into our friends Kathy and Jeff from Santa Barbara (I met Kathy on Day 8) while on a walk around the floor tonight. Jeff is possibly going to be discharged Friday to go back home. Kathy mentioned that the Village was quite full right now, so I need to find out if we will even have that option when Krista gets discharged.

I'm also planning on taking Krista's phone to a local repair guy tomorrow, Mobile iPhone Repair LA. Eric is the owner/operator there and his reviews look really good. Hopefully he can get the phone restarted so Krista can keep up with her email.
Your love, Lord, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the highest mountains,
your justice like the great deep.
You, Lord, preserve both people and animals.
How priceless is your unfailing love, O God!
People take refuge in the shadow of your wings.
They feast on the abundance of your house;
you give them drink from your river of delights.
For with you is the fountain of life;
in your light we see light.
(Psalm 36:5-9)

Tuesday, November 12, 2013

Day 22: Relief

This morning was really rough for Krista. The bone pain she's been dealing with as her body's in rapid blood production was excruciating, and the pain killer just wasn't doing the job it used to. (Her white blood count today was 6.3!) The pain specialist visited this morning in the midst of this suffering. He is so awesome! He listened to Krista's complaints without discarding her feelings, asked questions to clarify, and then decided to take her off the old pain killer and put her on a different one.

The new pain killer wasn't available until after lunch. By that time, Krista had slept through the morning being heavily medicated with the old pain killer. The new one was introduced and it seemed to help some, but not enough to get relief. She kept pressing the button every 10 minutes just to keep the edge off, but would have to call the nurse for the hourly bonus dose to keep going. The pain specialist came in later to see how it was going, and decided to adjust the dosage. He told me that he started her out on a very conservative dose and had no problem upping it based on how she responded.

It is wonderful to see how the right dose has helped poor Krista. She can take the new pain killer without any nausea and it doesn't make her drowsy - and at this dose, her pain is down to a really bearable level. She's had a really good evening, looking much more alert and stable when she gets up... and she even read some from a book she brought with her. She couldn't eat the pot roast she ordered, but a second order worked better and she ate some cream of wheat, yogurt, a Popsicle, and a banana quite well. I've gotten used to her looking miserable in the evening, but now she's looking great. Such a relief!

By the way, thank you to everyone who has sent cards to Krista in the hospital. They're all going up on the wall with the Go! Fight! Win! decoration. What a great encouragement!
Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
(Isaiah 40:28-31)

Monday, November 11, 2013

Day 21: Balancing Act

Each day I get more and more amazed at Krista's progress. Today her white blood count rocketed up from 1.7 to 4.1! That is just incredible... she's already in the normal range for white blood. (Most healthy people have between 4000 and 10000 white blood cells per microliter of blood, and they call this range 4.0 to 10.0). There's not much keeping her back from being discharged now, though it still is likely to be this weekend.

One of those "not much" is that she needs to be able to get enough nutrition on her own. Right now she's being fed through her bloodstream by a constant IV infusion of nutrition. They recently added some insulin to help her process the nutrition better, since her blood-sugar level was a little high. Today they also added lipids to the nutrition mix (apparently that's something they do 3 times a week normally). Instead of all that, she needs to be eating regularly (and keeping it down). We discovered that she's not ready for heavier foods like biscuits and gravy or grilled roast beef and provolone hoagie. But she does seem to do well with cereal, yogurt, soup, and puffed rice cakes (not all at the same time). The rice cakes seem to be particularly helpful to counter the "I need to eat now or I'll throw up" attacks that are continuing. 

We've also noticed that she's reacting to too much pain medicine given at once. She can give herself a small dose of the pain medicine once every 10 minutes and she seems to be ok with that (though it sometimes requires a nibble at rice cake). When the pain gets severe, she can request a boost from the nurse once per hour. Every time she gets that dose now, she instantly vomits without warning. We talked with the pain specialist about this and he agreed to try a lower dose. The bad effect is happening even with today's reduction. Tomorrow we'll try an even lower dose.

The cause of the pain is the very thing that is making her progress so wonderful. That new blood factory is just working so hard it hurts. Often times, it hurts a lot. I did a little research on it and couldn't find anything that they weren't already doing to help her through this pain. The muscle relaxer only takes the edge off, but it really takes pain killer to get through. Hopefully we can find a happy balance between addressing the bone pain and causing stomach upsetness. This inbalance is working against her being able to be discharged.

Another one of the "not much" keeping her her is her physical abilities. She will need to be able to get around on her own a bit better. Today she did really well. She left the room for the first time since the transplant. The physical therapist came and helped her walk two laps around the floor. They want her to do that twice a day, but she was knocked out this evening fighting the nausea/pain battle so we only got the one time in today. We'll try again tomorrow. In the meantime, we bring her to Jesus in prayer for healing.
News about him [Jesus] spread all over Syria, and people brought to him all who were ill with various diseases, those suffering severe pain, the demon-possessed, those having seizures, and the paralyzed; and he healed them.
(Matthew 4:24)

Sunday, November 10, 2013

Day 20: Accelerated Schedule

The white blood count continues to improve. Today it was an amazing 1.7. The oncologist says that if Krista continues at this rate that they may be able to discharge her from the hospital in about a week! This rapid production continues to cause quite a bit of lower back pain. She had been fairly low on pain killers, but now she's needing to get periodic boosts along with muscle relaxers which also seem to help some.

There's also a strange stomach thing going on. She is eating small amounts, but periodically she gets an intense feeling in her stomach that feels like if she doesn't eat something she will throw up. Once it actually happened; most of the time, however, if she eats a small amount the feeling goes away. We remember this symptom from the first transplant, where the only thing that stopped it was eating a small chunk of cheddar cheese. Maybe this is something we will have to be prepared for again.

Krista's phone is not functioning again after dropping it. I'm looking into local iPhone repair shops, and if anyone has a recommendation near Duarte, CA, please let me know. In the meantime, Krista won't be taking any calls or checking email.

Glen and Jannelle left this afternoon to stop at their time-share in Las Vegas for a bit before heading back to their home in Colorado. It was really great to have them here (thanks for all the help!). Now that they're gone, I'll need to lean on the nurses more to get breaks. They're really good here, and Krista's doing so much better, that this shouldn't be a problem.

The bigger problem is the week after next. I have a week-long training event I should really be at in Santa Barbara starting November 18. If Krista does well and gets discharged then she will be staying in "The Village" apartments during this time - and while she's there she needs someone with her all the time. Also, we would like to bring the boys down during Thanksgiving break, but they would not be allowed to stay with her in the Village. I was planning on getting a hotel, but couldn't stay there and have Krista in the Village. These are complicated problems that I don't see any obvious solutions to, so please join me in praying for scheduling wisdom the next couple of weeks.
And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work.
(2 Corinthians 9:8)

Saturday, November 9, 2013

Day 19: It Worked!

Great news today... Krista's white blood count jumped way up to 1.0! That's an incredible jump (yesterday it was 0.2). The importance of this is that it means that the transplant was successful and that the stem-cells have engrafted, setting up a new blood factory in Krista's bone marrow. This begins a whole new phase of her treatment.

In the short term, she's going to be having bone pain associated with the startup of the new blood factory. Krista has been having intense lower back pain today, which may be related to that. She also may have some muscle strain from an awkward reaction to putting pressure on a bruise on her shin as she was getting into bed last night. (She's got a lot of bruising from having low platelets, but the shin one was from bumping into some furniture the other day -- quite a painful welt!) There's not much relief for the back pain, though they've added muscle relaxers and that seems to take the edge off. Also, she's getting platelet transfusions now at 30k (instead of 20k) because of her bruising. She was at 27k tonight and just got another transfusion.

Krista's been having less trouble swallowing now, so they are slowly transitioning some of her IV medicines back to pill form. That's an important step to getting released, since you can't bring an IV home with you. Release can't happen until her white count goes up to the normal range (I think that's between 4.0 and 6.0), but that is not likely to happen for another week or two. Once they release her, we will go to the on-campus apartments called "The Village" where we'll stay for 3-4 weeks for daily observation as they try to manage the inevitable Graft-Versus-Host Disease (GVHD). They're now starting to look for signs of GVHD in Krista.

It was great to have Jannelle and Glenn here again, so I could take an extended break and do some errands like shopping, laundry and showering. I missed the majority of the music therapy session Krista got today, involving playing buffalo drums, deep resonating hand drums, like a large tamborine without chimes. The exercise reduced Krista's blood pressure more than the medicines have been able to. Krista asked me if there was a verse about music being good for health, but I couldn't find anything specific. Actually, most of the verses I found referring to music fall into two camps: worship and warfare. I like to apply the warfare aspects to health concerns, since it is a battle with life and death on the line. This one feels appropriate for today, especially the part about singing in bed.
Praise the Lord.
Sing to the Lord a new song,
His praise in the assembly of His faithful people.
Let Israel rejoice in their Maker;
let the people of Zion be glad in their King.
Let them praise His name with dancing
and make music to Him with timbrel and harp.
For the Lord takes delight in His people;
He crowns the humble with victory.
Let His faithful people rejoice in this honor
and sing for joy on their beds.
(Psalm 149:1-5)

Friday, November 8, 2013

Day 18: Changes

After a good night's sleep in my own bed, I was awakened by a call from Krista at 6:30 am. She was given platelets earlier and was having an extreme reaction to them. The reaction was in the form of hives that were visibly growing, as if they were chasing each other around her extremities. I prayed with her and drove back down to the City of Hope to be with her again. When I checked in with her on the road, she told me that they were able to stop the reaction with some medicines, but she was expecting to have to redo the platelets later after the medicine wore off. The nurse said, when I got there, that her platelet level was 34k, which is relatively good for her. They only transfuse under 20k, so the redo wasn't necessary.

Krista had her hair cut while I was away. She doesn't like how she looks without hair, but she has a really cute bonnet that she bought at the farmer's market they host at the City Of Hope every Thursday. She bought it about a month ago, but now she has need of it. Isn't it cute on her?

Glenn, Jannelle, Krista and I watched some video highlights of the choir performance last night. It was funny, because when I surprised Trevor by coming home to watch it he told me he didn't want me to go to the performance. I asked him why and he said, "Because you're going to record it and then Mom will put it on Facebook!" So, I promised him that I wouldn't do that, so you can't see the video here. Too bad, it was pretty cute.

It's been 9 days since the transplant so we are expecting her white blood count to start to increase soon, perhaps even tomorrow. That's pretty exciting because that would be the first signs that the transplant was successful. Of course, along with the increase of white blood count, they also begin looking for signs of Graft-Versus-Host Disease (GVHD). This is where the new immune system recognizes parts of her body as a foreign entity and starts to attack it. A small amount of GVHD is good, because it helps clear out any leukemia that survived the chemo. Too much can be dangerous. We're praying for just the right balance, which only the Lord knows exactly how to achieve.
There is a time for everything,
and a season for every activity under the heavens:
a time to plant and a time to uproot,
a time to tear down and a time to build,
a time to mourn and a time to dance,
a time to embrace and a time to refrain from embracing,
a time to keep and a time to throw away,
a time to be silent and a time to speak,
a time for war and a time for peace.
(Ecclesiastes 3:1-9)

Thursday, November 7, 2013

Day 17: Side Effects

I'm tired tonight from a long day so this post will be short. Krista is continuing to do well. She got a red blood transfusion this morning. Last night she couldn't sleep because of an extra steroid dose they gave her late on the day.  We spent an interesting time together around 3:30 am as she was enjoying the good feelings of some of the side effects of the meds she's on. It's not uncommon for transplant patients to have hallucinations, and Krista was seeing and hearing some that appear to be making her feel better. If her kidney and liver functions weren't doing as well as they are I would be worried. But as this is one of the few pleasures she's had in a while as long as the doctors aren't worried, I'm ok with it. 

Jannelle is staying the night with Krista tonight so I could go back to Santa Barbara to see Trevor's choir concert. It was fun to see them all singing broadway songs. I'll head back down tomorrow. 

The afflicted also will increase their gladness in the Lord,
And the needy of mankind will rejoice in the Holy One of Israel. 
(Isaiah 29:19)

Wednesday, November 6, 2013

Day 16: Continued Improvements

Krista is doing so much better today. There were no vomiting incidents at all, and her liver and kidney function is still stable and normal. Her platelet level was low, so she got a transfusion early this morning. We noticed some bruising which is typical of low platelets. That just takes some time to heal.

That reminds me that the City of Hope blood bank called me the other day asking if we knew anyone who would like to donate. They do things a bit different than UCLA and Santa Barbara in that blood products can be donated specifically for a patient at no cost. If you find yourself near Duarte, CA and have any extra blood, it could be really helpful -- either for Krista or for other patients here, too. (They have so many stem-cell transfusions here that they split the floors between specific ways of doing the transplant -- and the rooms are almost always full!) Krista can use platelet donations from any blood type, and if you have O-negative she can use whole blood also. If you are interested, call (626)471-7171 and ask for Jenifer, mentioning donating for Krista English. The donation center is open on the following days:

  • Mon, Tue 9:30 am - 6:30pm
  • Wed 8:00 am - 5:00 pm
  • Thurs-Sat 7:00 am - 4:00 pm
  • 2nd Sun of month (Nov 10th, this month) 7 am-4 pm
Krista's hair is starting to fall out. It was looking like she might keep it, but the clumps that are dropping probably indicate that it's not going to stay for long. They have a really good beauty/image group here, but so far Krista hasn't wanted to have them cut it off. She got a nice shorter haircut before starting the treatment, so it's not getting tangled at least.

Glenn and Jannelle were here again today. Krista had spilled some things on her blankets and I had some other laundry to do, so it was great to be able to leave for a couple of hours to take that and get some lunch. My mother, Jan, is with the kids in Santa Barbara and she's doing a great job with all the craziness of the boys schedules. Not only is it soccer finals this week, but Trevor also has a choir performance. The schedule I put together was going to be too much for Trevor, so they all figured out that it would be better for him to miss the last game of the season so that he can make the performance on time and with enough energy. I wish I could be there for it tomorrow! Hopefully someone will record a video of it for us.
We wait in hope for the Lord;
he is our help and our shield.
In him our hearts rejoice,
for we trust in his holy name.
May your unfailing love be with us, Lord,
even as we put our hope in you.
(Psalm 33:20-22)

Tuesday, November 5, 2013

Day 15: Adrenal Correction

Today started out just like the past few days with nausea and vomiting, weakness and drowsiness. Krista and I talked about her difficulties, and the one thing she didn't complain about was pain. That seemed strange to me so I mentioned it. Maybe she was getting too much pain killer and it was the pain killer that was making her throw up? We agreed to talk to the pain specialist about it.

When the next doctor in a lab coat came in, we both thought she was from pain specialty. We explained about the symptoms and how we suspected too much pain killer, but it turned out that she was really an endocrinologist! Krista's adrenal function has been low, and this has always been associated with stomach problems. She thought Krista could use more hydocortizone and that should help with her stomach problems.

We eventually saw the pain specialist and had the pain killer reduced (it wasn't all that high anyway).

Glenn and Jannelle spent the day in the room with us. This was great for me to get some work done on my laptop, but it sure wasn't the most exciting time for them. Krista still slept a lot. (The transplant wipes everyone out, even without adrenal fatigue.) Still it was good to have them here so we could take bathroom shifts.

This afternoon was quite different. Krista started being more alert and more capable of getting up on her own. Then she asked for a popsicle! She hasn't been able to keep sips of water down, so this was huge. We ordered a popsicle and an italian ice. She ate them both and they both stayed down. Amazing! Later she ordered dinner: chicken broth, a popsicle, an italian ice, and apple sauce. Again she ate it all (except for the chicken broth that didn't taste good to her). No more vomitting since the morning. Thank you Jesus!
I remember my affliction and my wandering,
the bitterness and the gall.
I well remember them,
and my soul is downcast within me.
Yet this I call to mind
and therefore I have hope:
Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The Lord is my portion;
therefore I will wait for him.”
The Lord is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly
for the salvation of the Lord.
(Lamentations 3:19-26)

Monday, November 4, 2013

Day 14: Small Improvement

Today was a lot like yesterday in regards to symptoms, and Krista is wondering how much more she can take. There's just no stopping this nausea and vomiting. The good thing is that her liver and kidney are functioning well. She did need platelets this morning, but that and the other blood labs are about as expected at this point. 

The oncologist made a few changes to the medicines today. The amount of anti-rejection drug was reduced because it is known to cause blurry vision and headaches when there's too much. They've already just about maxed her out on the kinds of anti-nausea they can give her. She's getting 5 different kinds of anti-nausea, including a patch for sea-sickness! The nurse said there's nothing more they can give her to help with that, but the oncologist made an order for medical marijuana as a last resort. It's in a pill form, and she's been having problems swallowing lately. After taking the first dose, she threw up about a minute later. There was no sign of the pill, though, so they think she kept it down. And for the first time, she said that she noticed a little less nausea after that. It definitely didn't cure the queasiness, but it did help at least.

Krista's mother Jannelle, spent the later half of the day in the room with Krista and I, so she got to experience first-hand how Krista's doing. Starting today, Krista has to have someone with her when she uses the restroom, because she's quite wobbly and often can't open her eyes very well. When Jannelle's not here and I have to step out, the nurses put an alarm on the bed so they can know when to help. I don't think that would be fast enough most of the time, so I'm trying to stay in the room as much as possible. With Jannelle's help, though I was able to go out to get some dinner which was a nice break. Thanks Jannelle!
I cry aloud to the Lord;
I lift up my voice to the Lord for mercy.
I pour out before him my complaint;
before him I tell my trouble.
When my spirit grows faint within me,
it is you who watch over my way.
(Psalm 142:1-3a)

Sunday, November 3, 2013

Day 13: The Worst Day

It is hard to express how things changed today -- partly because I wasn't there for much of it, but mostly for the intensity of the shift.  Krista spent most of the day today nauseous and vomiting. I tried to contact her all morning but she did not answer.  Now I know why.  When I arrived, she was asleep and barely responded when I told her the kids and my mother were here. She was just so wiped out from the morning that she couldn't respond or open her eyes.  The nurse said that they had been trying to help her with anti-nausea, but even though she hadn't eaten all day she still threw up a lot.  The kids didn't get much of a visit today, just enough to say bye. Trevor was disappointed because he had his magic tricks all ready to show her. (Yesterday he left them in the car.) After they left, Krista wanted me to sit with her while she threw up. Nothing seems to bring relief though. She said, "This is the worst day." Praying for a better tomorrow...
Be merciful to me, Lord, for I am in distress;
my eyes grow weak with sorrow,
my soul and body with grief.
My life is consumed by anguish
and my years by groaning;
my strength fails because of my affliction,
and my bones grow weak.
(Psalm 31:9-10)

Saturday, November 2, 2013

Day 12: Better Sleep

It looks like the sleeping aid helped Krista last night. There were just as many interruptions, but they didn't disturb her as much as they had previously. She didn't get a migraine today. Thank you, Jesus, for small mercies!

It was actually a strangely nice morning in  a way. Last night when I ordered dinner for Krista, she asked if I would put in a breakfast order also. So, just after the nurses did their 8 am vitals check and an endocrinologist followed up on a small calcium deficiency they wanted to adjust, breakfast showed up and we were able to share some time together before I had to leave. 

I drove home to Santa Barbara to take care of some errands and to pick the boys up for a visit with Mom in the hospital. It took longer than I had hoped to get back on the road, so we didn't get to visit until 8 pm. Trevor played backgammon with Krista while I read a story Adam has been working on. The visit was a little taxing on poor Krista who isn't capable of handling the energy of our youngest right now -- she had been sleeping most of the day again. We'll try a visit again in tomorrow when Trevor's a little more calm. 

My mother, Jan, is planning on stopping by to take the kids back to Santa Barbara. It will be good to see her briefly. Glenn and Jannelle will be heading down to the hospital after Jan arrives in SB. So we'll get to see more of them too. 

But You, O Lord, are a shield about me, 
My glory, and the One who lifts my head. 
I was crying to the Lord with my voice,
And He answered me from His holy mountain. Selah. 
I lay down and slept;
I awoke, for the Lord sustains me. 
(Psalm 3:3-5)

Friday, November 1, 2013

Day 11: Need Sleep

It was another night of poor sleep for Krista. Various nurses, assistants, and cleaning people regularly interrupt the quiet night. And once again, Krista spent the morning battling a migraine. She is suspecting that the interrupted sleep and the migraines are related. The oncologist said that she already had a standing order for sleeping medicine, so tonight she's going to try that to see if that helps.

Krista didn't do as well this afternoon as she had done yesterday afternoon. She mostly slept, but had some periods of alertness. At one point she asked me to help her find her glasses. I looked around and couldn't find them until I looked at her face... there they were! Her eyes are starting to go blurry even with the glasses on so it seemed like she didn't have them on. This evening the nurse explained that this can be a side effect of the medicine's she's getting. It should be reversible once those stop. It does seem like each time she gets these heavy treatments, she has to go in for an eye exam anyway to adjust the prescription.

We're planning on having the boys visit Krista this weekend. I just reserved a hotel room, one of the last in the whole area. I called around and everyone is booked because of the last horse races of the season at the Santa Anita horse track just a few miles away from the City of Hope. The attendant at Americas Best Value Inn & Suites was very kind and gave me a discount even though there were no discounted rooms available just because we're being treated at the City of Hope.

My mother has been caring for my father who had surgery earlier in the week. Apparently he is doing pretty good -- good enough to drive himself to Costco today! Mom thinks he should be able to take care of himself by Sunday, so she's planning on driving up to Santa Barbara then to stay with the boys a while. She'll drop by the hospital on her way and drive the kids back. Glenn and Jannelle are planning on staying a little while near the hospital before they head back to Colorado. They've been a huge help taking care of the boys for two weeks. Thanks Glenn and Jannelle!

A few people have asked if they can send cards to Krista in the hospital.Yes! (But please do not send flowers or uncooked foods as they won't even be allowed on the floor. They are very restrictive here.) The address is:
Krista English
City of Hope Helford Clinical Research Hospital
BMT Room 6135
1500 East Duarte Road
Duarte, CA 91010
I heard a song earlier today based on Psalm 46 that always speaks to me. (I couldn't find any legitimate links to audio or video of it.) I will end with that today.
God is our refuge and strength,
an ever-present help in trouble.
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam
and the mountains quake with their surging
(Psalm 46:1-3)