Tuesday, December 17, 2013

Day 56: Female?

Today Krista and I drove down to the City of Hope for a checkup. The labs show that the previous concern for her liver is not likely to be GVHD, since the results were better this time than last. Blood counts are good and the stomach pains she experiences from time to time don't appear to be anything serious. They're reducing her prednisone dose but not much else will change. 

On another note, Krista received a card today from the stem cell donor!  It was a very sweet letter (addressed "Dear little fighter heart") from a 24 year old German girl, just leaving university to "find her place in the world". We were so surprised because we had thought the donor was a young male. So now Krista has a new blood sister! The communications between donor and recipient are regulated so we don't know her name yet. Eventually when it is allowed (in about 2 years) we would love to meet her.

So much happened today, and we are so grateful to everyone for their kindness and generisity. My work held a bake sale to raise money for ongoing medical expenses. We couldn't be there but it looked like a very good turnout. Also, special thanks to Kim and Maya for their friendship and extra dose of love shown to Krista today. The Lord has been so good to us. 

Shout for joy to the Lord, all the earth. 
Worship the Lord with gladness;
come before Him with joyful songs. 
Know that the Lord is God.
It is He who made us, and we are His;
we are His people, the sheep of His pasture. 
Enter His gates with thanksgiving
and His courts with praise;
give thanks to Him and praise His name. 
For the Lord is good and His love endures forever;
His faithfulness continues through all generations. 
(Psalm 100)

Saturday, December 14, 2013

Day 53: Two Days

I was too tired last night to blog, so this is a two day summary.

Krista's visit to the City of Hope went well, though there were some adjustments that have to be made to her medicines. The labs are showing that her liver enzymes have increased unexpectedly. She had an ultrasound taken on her liver, looking for signs of GVHD activity - and while they were at it they continued on to ultrasound her stomach, gall bladder, and kidney. There was nothing unusual to report, though it is possible that there may be some GHVD in the liver that is just too small to report. They're increasing her ursodiol dose to better protect the liver.

One of the other medicines she takes seems to be causing a problems now since her triglicerides have increased. It's a known complication of the rapimune, an immune suppressant. They reduced the dose she takes of it since she's going to need to be on it for about 6 months. It's just another medicine that it's important to get the correct dosage for.

It was nice to have Michelle around for the trip down to City of Hope. (Thanks again for driving, Michelle!) The picture is of Krista and Michelle having a good time waiting for the valet to bring the van when they were ready to go. Things got a little complicated at that point because our van's battery had drained in the parking lot and the van wouldn't start for the valet. Fortunately, he was able to jump start it and the van seems to have recharged after the long ride home. At least it restarted easily today when we went off to see Trevor sing with his school choir. What a beautiful event. We're starting to get in the Christmas mood.

My cough has started back up in the last couple of days, and Trevor's started coughing too. We're trying to give Krista plenty of space to minimize the chance of her catching it too. Praying for healing for everyone here!
And He said, “If you will give earnest heed to the voice of the Lord your God, and do what is right in His sight, and give ear to His commandments, and keep all His statutes, I will put none of the diseases on you which I have put on the Egyptians; for I, the Lord, am your healer.”
(Exodus 15:26)

Thursday, December 12, 2013

Day 51: Big Day Tomorrow

Krista's continuing to do well here at home. Tomorrow she has another checkup down at City of Hope.  She has to leave by 6:30 am so that's going to be a challenge for her. I have to stay here because the cleaners are coming tomorrow also. Isn't it so nice that our friend Michelle is going to take Krista down and back. Thanks, Michelle!
I will listen to what God the Lord says;
he promises peace to his people, his faithful servants—
but let them not turn to folly.
Surely his salvation is near those who fear him,
that his glory may dwell in our land.
Love and faithfulness meet together;
righteousness and peace kiss each other.
Faithfulness springs forth from the earth,
and righteousness looks down from heaven.
The Lord will indeed give what is good,
and our land will yield its harvest.
Righteousness goes before him
and prepares the way for his steps.
(Psalm 85:8-13)

Wednesday, December 11, 2013

Day 50: Working

I was amazed to hear that Krista folded and put away the laundry while I was at work today. I meant to do that myself when I got home, but she beat me to it. She said that she didn't do it all at once, but she completed two basketfulls. Thank you, Lord, for how quickly she's progressing in her recovery. 

All your works praise you, Lord;
your faithful people extol you. 
They tell of the glory of your kingdom
and speak of your might, 
so that all people may know of your mighty acts
and the glorious splendor of your kingdom. 
Your kingdom is an everlasting kingdom,
and your dominion endures through all generations.
The Lord is trustworthy in all he promises
and faithful in all he does. 
(Psalm 145:10-13)

Tuesday, December 10, 2013

Day 49: Sleepy

After the big day yesterday, Krista had a well deserved sleepy day. She slept in late today and had a good afternoon nap. Both those worked well with our schedules, since she was awake when we were home. She's not got much energy or strength right now, but it's good to be able to share our regular days together as much as we do.
Therefore, since we have a great high priest who has ascended into heaven, Jesus the Son of God, let us hold firmly to the faith we profess. For we do not have a high priest who is unable to empathize with our weaknesses, but we have one who has been tempted in every way, just as we are—yet he did not sin. Let us then approach God’s throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need.
(Hebrews 4:14-16)

Monday, December 9, 2013

Day 48: Blessed

Krista had an appointment for a checkup at the City of Hope today. Our friend Kim so generously offered to take her down and back. It sounds like they had a good time visiting, and the checkup went well also. She's wiped out tonight, tired from the activity but satisfied with a day well spent.

I was able to go back to work today. My cough is actually almost gone now. I am just in awe of how blessed we are. I found an anonymous financial gift left in my office (thank you whoever is behind it)! Krista also says that we have received a large donation online. Thank you all so much for your generous help with all that we're going through. May The Lord bless you many times over!
How blessed is he who considers the helpless;
The Lord will deliver him in a day of trouble.
The Lord will protect him and keep him alive,
And he shall be called blessed upon the earth;
And do not give him over to the desire of his enemies.
The Lord will sustain him upon his sickbed;
In his illness, You restore him to health.
(Psalm 41:1-3)

Sunday, December 8, 2013

Day 47: It's Beginning To Look A Lot Like Christmas

It was amazing that Krista got to blog yesterday, but as she discovered the shakes make it really hard to type. So I'm back to the blog tonight. Krista's doing well at home, though she had big plans she hasn't been able to do just yet. Watching all those cooking shows inspired her to help out in the kitchen, organize meal plans, and help clean up. Well, cleaning is really not allowed as that would expose her to too many germs. Cooking would be fine, but it's pretty frustrating to do much more than simple things with the shakes. She found success helping to find some recipes for me to pick up stuff when I went shopping this afternoon, though!

I wasn't able to rest much today since Christmas is coming up fast. Trevor and I got all the decorations down. I worked the outside lights and he set up the miniature village inside. I always forget how nice it makes our house look. With Krista's immune system in the shape it's in, we can't risk having a live tree, so we brought back the outdoor tree that you can see through the window of our living room. We also have two small pre-decorated artificial trees that complete the indoor experience.

It's very exciting to be together for Christmas. The lights remind us of Christ who is the light of the world.

For God, who said, “Let light shine out of darkness,” made his light shine in our hearts to give us the light of the knowledge of God’s glory displayed in the face of Christ.

Saturday, December 7, 2013

Day 46: Home Again, Home Again...

Krista here! I am seeing if my fingers are willing to take over the blogger role. Unfortunately, the medication tacrolimus causes the shakes. When my youngest saw my hands shaking, he exclaimed, "That is so cool!" To which my oldest corrected him, "Trevor, that is not cool. I'm sure she doesn't enjoy it." They spent a few minutes discussing the joy and dismay of my new shake. FYI, Adam was right - not fun. And now I know, I have to acknowledge that I can not type except to peck with two fingers.

I just spent a week at City of Hope apparently recovering from a nasty stomach flu. They were treating me for an infection called c.diff just in case since they found an area of inflammation in there. I really can't believe how sick I was last Saturday and Sunday and how things changed around in such short time. Thank God!

I was glad to be there for the full week to let everyone get over their own flu. Mike got extra rest time. Trevor's lasted only a couple days and Adam just needed extra naps.

My labs are awesome - everything in normal range and platelets 230,000k! Technically I'm no longer neutropenic, so I am introducing fresh foods again. I can't imagine how I am supposed to live on processed, all cooked foods for 100 days and expect further healing. The 100 day "rule" is quite arbitrary and unique to City of Hope. UCLA's rule was just to eat low bacteria until your white count was normal. My favorite Nurse Practioner, Corie, and I had this discussion when she fell back into her UCLA rules having worked there for longer than at City of Hope. In fact, we shared many funny stories having been at UCLA at the same time and she knew Dr. Schiller.

I wish I had a picture to share from my week, but it was a real lazy one for me. Blah blah blah! I did lose some muscle as a result, but I have plans for improvement!

Tomorrow...it will begin to look and sound more like Christmas around here. I'm really looking forward to a quiet Christmas with the kids and Mike since we COMPLETELY missed Thanksgiving. That's a first!

Gracious is the Lord, and righteous;
Yes, our God is compassionate. 
The Lord preserves the simple;
I was brought low, and He saved me. Return to your rest, O my soul,
For the Lord has dealt bountifully with you. 
(Psalm 116:5-7)

Friday, December 6, 2013

Day 45: Preparations

Krista's coming home tomorrow. I'm about as rested as I can be, and the house is ready for her. I'll still wear a mask in the house as a precaution until my cough is all gone though. It's supposed to rain tomorrow. Praying for a safe drive. 

If the clouds are full, they pour out rain upon the earth; and whether a tree falls toward the south or toward the north, wherever the tree falls, there it lies. He who watches the wind will not sow and he who looks at the clouds will not reap. Just as you do not know the path of the wind and how bones are formed in the womb of the pregnant woman, so you do not know the activity of God who makes all things. 
(Ecclesiastes 11:3-5)

Thursday, December 5, 2013

Day 44: Extended

After the sudden turn around of events this morning, not too much has happened. I spent the day resting at home and Krista spent the day transitioning off IV medicines and onto pills. It turns out that she probably won't be released until Saturday, so I'll get another day to rest off my virus cough.

Something happened to Krista's phone charger today. The wires are now exposed and she can't use it to charge her phone. So don't expect her to answer if you call, text, or message. I'll bring her a new one Saturday when I pick her up.
Be patient, then, brothers and sisters, until the Lord’s coming. See how the farmer waits for the land to yield its valuable crop, patiently waiting for the autumn and spring rains. You too, be patient and stand firm, because the Lord’s coming is near.
(James 5:7-8)

Day 43: Changing

So much is changing right now, it's hard to be certain in what to communicate. Krista had her colonoscopy and biopsies the other day. Initially, there were reports of signs of GVHD taking place internally. There was also reports of GVHD activity found in the skin biopsy from the rash she had earlier. They told us that they were going to put her on a high dose prednisone schedule to get this under control and that it would keep Krista in the hospital for another week. As a reminder, GVHD is potentially life-threatening if it gets bad - but they do want to see some GVHD because it helps fight against any remaining leukemia (which in Krista's case has shown to be problematic).  Krista posted some comments to Facebook expressing this concern, and many people were praying for the proper GVHD balance.

I have been fighting this cough for a while now, and it started to affect my voice too. Krista thought it would be best for me to go home and get some rest. Trevor had also gotten sick earlier in the day, so we decided it would be better for him to rest it off at home.  I drove home in the evening and picked up the kids and got to bed early to start my rest. I was resting so I couldn't publish a post last night, which is probably a good thing because this morning so many things have changed....

The doctors now say that there are NOT signs of GVHD in her gut, though there was signs of it in the skin biopsy. This is a total answer to all the Facebook prayers! The stomach problems were more likely to be due to the virus that we've all acquired. It sounds like the week-long treatment isn't necessary anymore, so they would like to discharge her tomorrow! Krista is checking on whether there are any openings at the Village now. I'll be heading back down there tomorrow either way. If there's an opening, then I'll bring her clothes and stay with her there. Otherwise, I'll pick her up and bring her back home to Santa Barbara.
In my distress I called to the Lord;
I cried to my God for help.
From his temple he heard my voice;
my cry came before him, into his ears.
(Psalm 18:6)

Tuesday, December 3, 2013

Day 42: An Answered Prayer

We're making slow steps toward finding out what's going on in Krista's body. She was told not to eat or drink after midnight last night, so I expected the procedure to be done in the early morning. It didn't happen until 2 pm. That ended up being ok, because it gave me time to pack up her things, since there was an opening on the 6th floor. Thank you, God! That's a direct answer to prayer. It is noticeably different up here. The staff is much more attentive.

Anyway, on her way to the biopsy one of the nurses told Krista there was good news... the results were back and 100% of the cells were the donors! I am just as confused as you are about what test was performed, since I thought that was something that would have come back from the bone marrow biopsy (which they hadn't performed yet).  I'll take the good news though. That just further confirms that the transplant was successful.

The colonoscopy and biopsies went well, but I don't have any results back yet. We'll have to wait at least until morning for that.  Krista's sleeping now. They're giving her a bag of platelets, even though her counts were pretty good. There may have been some extra blood or bruising caused by the procedure, so they're giving her platelets just to be safe. She's been dozing a lot since she got back. I think the anesthesia may take some time to wear off.
Lord, you alone are my portion and my cup;
you make my lot secure.
The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance.
I will praise the Lord, who counsels me; even at night my heart instructs me.
I keep my eyes always on the Lord. With him at my right hand, I will not be shaken.Therefore my heart is glad and my tongue rejoices;
my body also will rest secure,
because you will not abandon me to the realm of the dead, nor will you let your faithful one see decay.
You make known to me the path of life; you will fill me with joy in your presence,
with eternal pleasures at your right hand.
(Psalm 16:5-11)

Day 41: A Few Of My (Not) Favorite Things

Krista is not enjoying her time on the fourth floor. There's been some improvement in the management of her pain, though they still haven't got to the bottom of what is causing it just yet. She had a CT scan on her abdomen today to test for teflitis, but we haven't heard any results yet. She is scheduled for a two endoscopic procedures tomorrow to view her entire digestive tract for signs of GVHD and to take an internal biopsy of affected area(s).  While she's asleep for those procedures, they're also going to take a bone marrow biopsy to hopefully verify that she is in remission from leukemia. Did I mention the gastrologist (the one doing the endoscopic procedure tomorrow) did not do the most gentle examination today? Ouch, ouch, ouch!

So all of this is uncomfortable, not to mention her regular pain, but on top of all that she's been frustrated with the nurses also. Krista's voice has been pretty low, so it's hard to hear her, but the nurses don't seem to take the time to listen like the nurses on the 5th and 6th floors did. (The 4th floor is the "surgical recovery" floor, so they're not used to going out of their way to be extra caring?) They just come in and administer what they have without checking in with her. Krista always likes to keep on top of what she's being given because the nurses don't always know what works best for her. (For example they are constantly offering her zofran for nausea, even though we keep reminding them that zofran gives her headaches.) She has a request to move upstairs, but so far there hasn't been an opening. Please, Lord, grant her some comfort in her suffering!
[Jesus Speaking] "Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened. Which of you, if your son asks for bread, will give him a stone? Or if he asks for a fish, will give him a snake? If you, then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give good gifts to those who ask him!"
(Matthew 7:7-11)

Sunday, December 1, 2013

Day 40: Who Done It

We unexpectedly hit the road again today, taking Krista back to the City of Hope to visit the emergency clinic. The nausea got particularly bad and I was getting concerned since she hadn't been able to take her pills for 24 hours. We called the triage nurse and she suggested trying an anti-nausea dose to see if that would make it possible to take the other pills. I thought it was working and tried to get her to take some pills about a half-hour after taking the anti-nausea, but she just couldn't even try to get them in her mouth. Another half-hour later she had dry heaves.

Since the anti-nausea didn't work, the next step was to get her into the car and off to the emergency clinic. As I was getting stuff ready, she began to have diarrhea symptoms in addition to the nausea. I gave her a dose of immodium, cleaned her up and helped her dress, and finally into the car. On the car ride down, she threw up the immoduim. Fortunately, we had something to catch it in, and there were no other incidents on the ride.

They x-rayed her abdomen and saw that there was an area of her intestines that is enlarged. This indicates an infection of some kind. It's probably not the virus that brought her in last week, but rather one of the many intestinal bacteria that are normal but can get out of control when the immune system is down. The pain she has been experiencing today reminded me of when she had teflitis during her first leukemia treatment. The nurse here says that they are also testing for another kind of intestinal bacteria called C. diff. Both sound like they have similar symptoms, so it's probably up to the lab work to differentiate. Antibiotics are the solution but there are specific ones that can target the particular problem individually.  Either way, it's an extremely painful time that is very frustrating and scary for Krista.  Lord, help quickly!
Hear my prayer, Lord;
let my cry for help come to you.
Do not hide your face from me
when I am in distress.
Turn your ear to me;
when I call, answer me quickly.
For my days vanish like smoke;
my bones burn like glowing embers.
My heart is blighted and withered like grass;
I forget to eat my food.
(Psalm 102:1-4)

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 yelp.com 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)

Thursday, October 31, 2013

Day 10: Sufficient Grace

Last night was really rough.  Krista went to bed feeling achy all over -- probably a reaction to the transfusion -- and then developed a migraine.  The medicine pumps were beeping though the night and she didn't sleep much even though she was really groggy.  I slept through the night ok, but it's sort of like long-term camping -- not all that comfortable.

John Piper reminded me in my devotional reading this morning that God has purposes for suffering that He doesn't relieve. Before I left to take a shower, I prayed over Krista that she would experience God's grace as sufficient for her today.

While I was gone, the oncologist visited and made some good changes. The pain medicine delivery was adjusted to provide a constant low-dose supply, with extra being delivered when Krista presses the button. It turned out that the button pressing was too complicated for Krista to track. Later in the day her nurse reprogrammed the PCA to show a light on the button when it was ok to press the button. That really helped her to know how to work it. She's been so groggy that it's hard for her to keep track of most anything. She turned away the physical therapist and the recreational therapist because she just couldn't keep her eyes open.

Around 2 pm, something changed.  She started to be more alert and wanted to eat a meatball sandwich. Later we took a walk around the building and played some backgammon.  She still needs to take frequent naps, but it seems much different than the last 24 hours. 

It's likely going to be a couple of weeks before the new immune system starts to show itself.  We're expecting her blood counts to be dropping during that time.  So far they're low but she hasn't required any transfusions yet.  

I think that God really answered my prayer this morning. Thank you all for your prayers as well.  May He continue to get the glory in how we suffer together!
But he [Jesus] said to me [Paul], “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
(2 Corinthians 12:9)

Wednesday, October 30, 2013

Day 9: D0 Happy Birthday!

Today was the big transplant day, D0 (D-zero) as they wrote on her whiteboard, which means that Krista gets to celebrate a whole new birthday, again. She happens to share this birthday with our youngest son, Trevor, who is 12 today.  Happy birthday, Trevor! Sorry we couldn't be there to celebrate with you.  Mammaw and Pappaw got him a cake and sang Happy Birthday with us on Skype, so we sort of felt like we were there.

Krista had a marginally better day today. At least there were no tears because of the pain. But she was frustrated with how groggy she was feeling. It's actually a bit difficult to explain why she was so groggy since the actual amount of pain killers she was getting was less than on previous days. Since she was in control of the pain killers, she hasn't been using it as much as she is allowed. Her blood counts are pretty low though, and that can make her weak. Just not usually uncontrollably sleepy. She would fall asleep sitting up!

Maybe it was because of the anti-nausea meds she has been taking? There was a lot of the wrong kind of color today; lots of throwing up, that is. But that was probably due to Krista being so constipated. She success moving it out twice today, thanks to the addition of prune juice to her lunch and dinner. Still, it feels like something's not moving higher up. Once that gets cleared out I think she'll feel a lot better.

The stem cells arrived right on time and her nurse, Richard, was excited because he was going to be able to administer it before his shift ended at 7 pm.  Here's some pictures of how it happened...

Prepping the patient...
Krista giving her best smile for how awful she feels...

Richard hanging the bag of stem cells...

Here's what the stem cells look like up closer...

Stem cells starting to go in...
The last of the stem cells flushing out...
It is amazing how different this transplant was than the first one. There was no parade of doctors, nurses, and med students; just the nurse. The bag of stem cells was larger and filled with fresh cells, not frozen. The nurse said that this has something to do with the defrosting process -- it's easier to defrost a smaller amount. The cells had no preservatives, where frozen cells require preservatives. That is why she needed the lollipop last time -- to counter the reaction to the preservatives. Last time, she was wide awake and alert; this time she was drowsy and even fell asleep after it was over. Last time, the reaction she had caused her nose to fill up with water and she had to pee only after being flushed out with a strong diuretic to keep her from drowning in her own water; this time she had to pee repeatedly in the middle of the transplant because she felt like something was pushing on her bladder (probably related to the constipation). So far so good!

Now, we'll have to wait and see how the new cells get along with her body. A 10 out of 10 match makes for good changes of success, but there are so many variables it's impossible to tell until it happens. It's ultimately up to the Lord to make it happen. Lord, bring healing to your precious daughter Krista!
May the Lord grant all your requests.
Now this I know:
The Lord gives victory to his anointed.
He answers him from his heavenly sanctuary
with the victorious power of his right hand.
Some trust in chariots and some in horses,
but we trust in the name of the Lord our God.
They are brought to their knees and fall,
but we rise up and stand firm.
Lord, give victory to the king!
Answer us when we call!
(Psalm 20:5b-9)