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)