Sunday, May 31, 2009

Transitions

Krista had a harder day today dealing with pains and a bad headache. The pain makes it so that she has to lay down, but the transition to laying down often gets the headache going really strong. Krista thinks that it may be due to the metoprolol that she's been taking to offset the blood pressure rising effects of cyclosporine. Tomorrow, she'll probably go back to taking it only when her diastolic pressure gets over 90. We bought a blood pressure monitor a while ago so that she could keep an eye on it.

She wasn't able to make it to church because of the pain, but we did get her out of the house to walk around a little at the nearby dog shelter. There, Adam got to have a little more experience around dogs, and everyone really enjoyed spending a few minutes petting an Australian Shepperd named Maxy. He was a great dog -- smart, quiet, and friendly -- but he wouldn't fit with our family, needing much more activity than we can provide.

I was pleasantly surprised earlier this morning to find that Sean McDowell was speaking at church today. This time he's promoting a new book he is co-author of: Understanding Intelligent Design - Everything You Need To Know In Plain Language. He said his role in the book was the "plain language" part, but even so he still has an impressive grasp of science and the Christian worldview and it's always inspiring to hear from him. Sean also has a strong affiliation with Wheatstone Academy, and they are having a fundraiser dinner tonight that I wish we could be at. Wheatstone does such a good job helping prepare young Christian people to stand up under the secular onslaught they will likely go through as they transition into a college environment. A few weeks ago I had read that less than 1/2 percent of young people ages 18-23 holds to a bibilcal worldview, and many have pointed out that youths brought up in the church who do not have a solid foundation for their faith are very likely to exit college with a secular worldview instead. It really doesn't have to be that way, though, since there are plenty of logical, scientific reasons for faith... way to go Sean and Wheatstone for making these known to the next generation!

The heavens declare the glory of God;
the skies proclaim the work of His hands.
Day after day they pour forth speech;
night after night they display knowledge.
There is no speech or language
where their voice is not heard.
Their voice goes out into all the earth,
their words to the ends of the world.
(Psalm 19:1-4a)

Saturday, May 30, 2009

Whispering

We were going to try to do some geocaching today, but Krista was not feeling well enough to do so. Actually, she was feeling fine except for a painful condition on her derriere that made sitting very uncomfortable. I told her I wouldn't blog about it, so no details for you. But even with the excruciating pain she still wanted to get out of the house for some exercise.

We have been wanting to get a dog for a while now. The boys would do good having a companion to take care of, and Krista wants to have a dog to motivate her to exercise -- when she's stronger that is. But prior experience showed us that we don't naturally have what it takes to keep a dog well behaved. The dog we used to have did great at obedience class, but at home it was a different story. We've been watching Cesar Milan's TV show, The Dog Whisperer, and really like his approach to dog ownership. Krista wanted to try out some of his techniques on dogs at the local adoption center to see if it makes any difference. Amazingly, it did! She was able to calm one of the "meanest" dogs that barked like crazy just by standing there. Adam is quite fearful of barking dogs and hasn't quite learned the technique, and when he came next to Krista, the dog started barking ferociously again. But then when I stepped in front of Adam, the dog calmed down again. Trevor had it down pat and told the dog to sit -- and he did! We have a bit more training to go through before we're ready, but it looks like we're making progress.

Thanks go out today to Deanna Carr for bringing us a sensitively made chicken enchilada. She read that Krista was having trouble with spicy foods, so she modified the enchilada so half of them were without any spice. It turned out that the kids actually liked it better that way, too. Also thanks to Randy Sutton for going out of his way to help Adam put together his own character for the Heros game. He's really loving it!

Do not be like the horse or the mule,
which have no understanding
but must be controlled by bit and bridle
or they will not come to you
Many are the woes of the wicked,
but the LORD's unfailing love
surrounds the man who trusts in Him.
(Psalm 32:9-10)

Friday, May 29, 2009

Too Much, Too Little

Krista has been craving appetizers constantly this week. Though it sounded really good last night, the guacamole and chips I made for Krista last night didn't agree with her stomach. It was a little on the spicy side, even for me. She went to bed with stomach pains and this morning it was doing a number on her lower intestines. It wasn't severe, but it was uncomfortable... and temporary. By the afternoon she was feeling better, though sleepy. I've been pretty sleepy, too; trying to keep up on everything has kept me up late at night working. Mia McElwee brought us a pasta and meatballs dinner -- thanks Mia! I get to go to bed that much earlier because of it!

Krista started having some muscle pain this evening. We got the lab results back today from yesterday's blood test. There haven't been any major changes, but I did notice that her magnesium was on the low side. Magnesium deficiency can display itself in loss of appetite, nausea, vomiting, fatigue, and weakness for mild deficiency and numbness, tingling, muscle contractions and cramps, seizures (sudden changes in behaviors caused by excessive electrical activity in the brain), personality changes, abnormal heart rhythms, and coronary spasms can occur. She's had some of these symptoms in the past few weeks, but I don't think her level (which is just under the normal range) is completely responsible for them. I went ahead and gave her a magnesium supplement to see if it helps her anyway. It can't hurt to bring the level up a little.

[Jesus speaking] "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light."
(Matthew 11:28-30)

Thursday, May 28, 2009

Labs

The oncology appointment went well this morning, even though Krista didn't have her labs done. Something strange happened at the lab yesterday, because they actually had the order when we were there last night and were told they didn't have an order yet. Oops. I had a copy of her labs from last Friday instead. The doctor was really pleased with her progress. We made a schedule for getting labs done locally every other week starting next week. And then we went back to the lab to finally get the labs she was supposed to have done last night. I haven't heard any results back from it.

Krista was feeling much better today. I had to go into work this afternoon, and while I was gone she cleaned off the counter, did some dishes, and visited with our neighbors. I was amazed to hear all that when I got home! What a change from how she was doing earlier in the week.

Look to the LORD and his strength;
seek his face always.
Remember the wonders he has done,
his miracles, and the judgments he pronounced,
(Psalm 105:4-5)

Lost and Found

Krista had a better day, though she slept most of morning. By the afternoon, she found that she had more energy, and she did some reading with Trevor while I did some work. She even made herself a snack. Her appetite has been much better since her sickness the other day, which is good because she had lost some weight because of it.

She has a regular office visit with her local oncologist tomorrow, and she was supposed to get a blood test today to have it ready for tomorrow. We didn't get to the lab until later in the day, though, and for some reason the lab didn't have the order. They said that we could try again in the morning, but the results may not be available for the appointment. Krista thinks we may need to reschedule the whole thing. We only need to meet with him once before June 10, which is our next UCLA appointment.

The Suttons brought us a mexican pizza dinner. Adam has really appreciated being able to play the Hero's game that Randy created. He has some of the older kids get together at his house for the game every other week. It's a lot of fun and it challenges moral thinking and promoting teamwork. Thanks Randy and Jenny!

[Jesus speaking] "So I say to you: 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; he who seeks finds; and to him who knocks, the door will be opened. Which of you fathers, if your son asks for a fish, will give him a snake instead? Or if he asks for an egg, will give him a scorpion? 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 the Holy Spirit to those who ask him!"
(Luke 11:9-13)

Tuesday, May 26, 2009

Unexpected

I just never know what to expect from day to day. Very early this morning, I woke up to Krista wretching into a bucket. It's very strange that this would develop out-of-the-blue like that. She didn't have a fever, and she didn't throw up anymore after that. Instead, it turned into bouts of diarrhea. With no fever, and no visible blood, it didn't require a call to UCLA. So I administered apple sauce and bananas, keeping with the BRAT diet recommended for gastrointestinal problems.

I did end up calling UCLA, but only to get the lab results from Friday's labs. Everything checked out just fine. Platelets were at 101,000, white blood at 5.3, red blood at 11.1. Potassium was 4.3, right in the middle of normal. All the liver functions were within the normal range also. The only unexpected value was in the creatine level being slightly elevated up to 1.7, where the top of normal is 1.4. The transplant coordinator told me that since the BUN results were within normal that it probably means that she needs to drink more -- about a cup an hour.

The kids got to have a very special park-day at Chase Palm Park. Since it is the last one for the year, they decided to make it a real good one, complete with water guns. I wasn't expecting a water fight, so Trevor and I picked up some piston-styled soakers while Adam was at his drum lesson. Then they got all suited up and I dropped them off at the park where there were lots of other Homesteaders. I had to go to work for a meeting (where I learned that there was a 24-hour virus going around that causes symptoms like Krista was having), and the Martons brought the kids back for me -- along with a terriaki chicken dinner. Regina Shea also brought us a tortellini dinner. That was pretty fun to have a smorgasbord of sorts, and Krista was feeling good enough by dinnertime to partake. Thanks Katherine and Regina! And praise God that Krista is feeling better!

Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will make your paths straight.
Do not be wise in your own eyes;
fear the LORD and shun evil.
This will bring health to your body
and nourishment to your bones.
(Proverbs 3:5-8)

Duck Food

Krista had a rougher day today than was typical of the past few days. She started experiencing swollen nodes and facial neuropathy, and she slept a lot until the afternoon. I was finally motivated to sweep, vacuum, and do laundry. At least we're ready for the upcoming week, now.

Once I got that all squared away, I saw that Krista was needing to get out since she didn't get out yesterday. It was fine to let her body catch up from Saturday's activity, but we didn't want to break the progress cycle by taking much more time off between active days. We had some extra stale bread in our fridgerator for feeding ducks, so I thought Lake Los Carneros would be a good place to take her. There are paved roads that go to where the ducks are, which would make wheelchair access easier. Lake Los Carneros also has a number of geocaches, and Krista and the boys wanted to try to find some. I hadn't realized that the paths around the lake aren't all paved, though, so we had to do a bit of offroading with the wheelchair, and Krista got her exercise walking when the terrain was too rough to wheel her through. We found some fun climbing trees and tree swings, and when it was all over we had also found three geocaches. The funny thing is that along the way we somehow lost the bread that we had brought to feed the ducks. It looked like the ducks were doing pretty well even without our bread.

The heavens declare the glory of God;
the skies proclaim the work of his hands.
Day after day they pour forth speech;
night after night they display knowledge.
There is no speech or language
where their voice is not heard.
Their voice goes out into all the earth,
their words to the ends of the world.
In the heavens he has pitched a tent for the sun,
which is like a bridegroom coming forth from his pavilion,
like a champion rejoicing to run his course.
It rises at one end of the heavens
and makes its circuit to the other;
nothing is hidden from its heat.
The law of the LORD is perfect,
reviving the soul.
The statutes of the LORD are trustworthy,
making wise the simple.
The precepts of the LORD are right,
giving joy to the heart.
The commands of the LORD are radiant,
giving light to the eyes.
The fear of the LORD is pure,
enduring forever.
The ordinances of the LORD are sure
and altogether righteous.
They are more precious than gold,
than much pure gold;
they are sweeter than honey,
than honey from the comb.
By them is your servant warned;
in keeping them there is great reward.
Who can discern his errors?
Forgive my hidden faults.
Keep your servant also from willful sins;
may they not rule over me.
Then will I be blameless,
innocent of great transgression.
May the words of my mouth and the meditation of my heart
be pleasing in your sight,
O LORD, my Rock and my Redeemer.
(Psalm 19)

Monday, May 25, 2009

Day Of Rest

I stayed up way too late Saturday night. I was trying to catch up on my work. Poor Adam kept getting up, too, complaining of being itchy. I thought that it might have been from something in the geocaching bushes that irritated him, so I had him take a shower first. That didn't help. Benedryl cream helped in the areas I put it on, but the itching was just about everywhere. Finally, around 1 a.m. I gave him a benedryl pill and that did the trick. No itching today at all!

We all slept in late this morning and that set the pace for the day. We just rested most of the day. I wanted to do some cleaning, but that just wasn't going to happen. The good thing is that even with lounging around, Krista was feeling much better than she had been last week. After all that activity yesterday, I think that's really great.

There remains, then, a Sabbath-rest for the people of God; for anyone who enters God's rest also rests from his own work, just as God did from His.
(Hebrews 4:9-10)

Saturday, May 23, 2009

Inspired

Krista was really inspired after yesterday's reunion, especially from Tim's gumption in wanting to get back to outdoor activities -- and that our doctor said it would be OK for him to be active! I guess if they were discussing walking that would be expected, but they were talking surfing and skateboarding... amazing! Krista recognized yesterday that she usually feels better when she has to go out, so she wanted to try getting out today.

The day started off slowly like usual, but Krista wasn't going to resign herself to the couch by default. She brought a regular chair to sit in, just so she wouldn't get too comfortable. And instead of a bath, she tried taking a shower for the first time since the transplant. I was concerned about the shower because our physical therapist had told her months ago that the sensation of the shower would be shocking and probably drain her energy the first time. It did feel strange at first because she's not used to that much stimulation on her skin, but she did great with it! She actually said that it was easier to get clean in the shower than in the bath.

After the shower, we headed out to Costco to get her glasses adjusted. Her glasses had become loose fitting since she got the transplant and they fall off her face if she bends over. On the way, we stopped to get some pizza at Gina's for lunch. She was a little tired from walking around the restaurant area, so when we went to Costco I wheeled her around in the wheelchair. It worked great and she was able to check out a few displays while we were there. She was getting her glasses adjusted when our eye doctor, Dr. Neil Mietus, who is also a friend of ours from Reality Carpinteria, came walking by. We haven't seen him in a couple of years, so that was a really nice surprise to see him. Once the glasses were adjusted, we stopped in at the new Best Buy next door to check out webcams (inspired by Oprah's recent Skype show). We didn't get one, but it helped Krista to understand the options.

That was a lot of activity, so we came home and took a little nap. But she wasn't done yet. Krista had learned that there was a new litter of baby goats in town and that Katherine Marton was planning on visiting them early this evening. Before that, though, we needed to go to the golf course to sign the boys up for a 3-day summer camp, which my mother wanted to give to the boys along with a week-long soccer camp. (Thanks Mom!) We had also talked about trying our hand at geocaching again, and there just happened to be a geocache hidden just behind the golf course. We got the boys signed up, found the geocache, ate a snack, picked up the Martons (our first real use of the minivan), and made it to see the goats right on time. Here's a few shots from our visit. The four "kids" were only a few days old, and about the size of an average cat. They were still a little wobbly but just starting to frolic a little. Very cute! They were a long-eared variety, called Nubian, that produce a higher butterfat milk than most goats. Adam especially liked seeing them, and Trevor especially liked seeing Garrett. Krista was so glad to be there but could feel herself getting to the end of her energy, so I took her back to the car while the rest finished up their visit.

Sue Reynolds brought us a spaghetti dinner tonight, and it was nice to be able to visit with her and her son Jerimiah, too. We've been so blessed to have such great help with these meals. Linda Berkley made us homemade polenta with ragu yesterday, too. God bless you all! Krista went to bed early tonight, tired but glad to have been able to get out to be in the real world once again.

Praise be to the LORD,
for he has heard my cry for mercy.
The LORD is my strength and my shield;
my heart trusts in him, and I am helped.
My heart leaps for joy
and I will give thanks to him in song.
The LORD is the strength of his people,
a fortress of salvation for his anointed one.
Save your people and bless your inheritance;
be their shepherd and carry them forever.
(Psalm 28:6-9)

Friday, May 22, 2009

Reunion

It started off as another difficult day for Krista. She was buzzing so much from the shaking that she had a tough time getting out of bed. But after some breakfast in bed, she got up, got a bath, and we made it out of the house. We dropped Trevor off with the Steffen's, and brought Adam with us because we didn't want him spreading his ear infection around to another family.

Krista was wondering as we rolled into the doctor's office at UCLA if we would see Terry Campell (our friend from Paso Robles who had a transplant at the same time) and his wife Monica since they usually have appointments on Friday. It turned out that not only did we see them, but we also saw Tim Potter (the young guy who played the digeridoo) and his mother, Julia, and brother, Kevin (who took the picture). (We didn't recognize Tim at first because he had hair and a beard). As we waited in the waiting room, we had a great reunion. It is encouraging to hear from others who have gone through the same thing, because everyone was dealing with emergency room visits, nausea, etc. Tim was only there to get "weighed in" because he has been loosing weight. Other than that, though, it sounded like he was doing really well. He'll be back to surfing in no time. Krista also noticed that Terry had fingernail lines just like she has. The doctor had told her previously that it's a typical thing to happen with his patients and that the tops half of the nail was dead and would eventually grow out and fall off. Around Halloween, he tells his patients to make a scary show of it by taking off their nails in front of dressed up kids! None of them have tried this yet, but it's not supposed to hurt.

The actual appointment got turned all upside down for some reason. We were supposed to have the blood draw first and then see the doctor after the results got in. Instead, the attendant told us that the doctor wanted to see us first, and then to do the labs. We went over our concerns with him and were surprised by the answers he had. The shaking, he said, was good; it shows that she's getting a "theraputic" level of cyclosporine. He doesn't want to cut down on it either because he's concerned that the nausea may be due to some GVHD. But at the same time, he said that the nausea may be because of steroid-withdraw. He gave her a prescription for a very low-dose of prednisone to see if that helps the nausea. We're supposed to see our local oncologist next week just to get a checkup, since Dr. Schiller is going to be out for a couple of weeks on a trip to Israel. Sounds like a great vacation!

Sing to God, O kingdoms of the earth,
sing praise to the Lord,
to him who rides the ancient skies above,
who thunders with mighty voice.
Proclaim the power of God,
whose majesty is over Israel,
whose power is in the skies.
You are awesome, O God, in your sanctuary;
the God of Israel gives power and strength to his people.
Praise be to God!
(Psalm 68:32-35)

Thursday, May 21, 2009

Struggles

It's been a rough day for Krista today. She's been dealing with the usual symptoms: nausea, weakness, etc. The past few days, she's been like this -- especially in the morning -- and then in the evening, she usually feels a little better. Today she followed the same pattern, but the whole day was taken down a notch. The bad part seemed a little worse and the good part seemed a little worse. It was a bactrim day, so that may have something to do with the quality of the day. The nausea made keeping pills down really difficult, but at least they've stayed down.

We are going down to UCLA tomorrow for a follow-up appointment from last week's saline flush. On Monday, her creatinine level was down to 1.4 which is lower than Friday's 1.8. (1.4 is the top of the normal range for creatinine.) It's possible, though unlikely, that the level's gone back up again and is making her feel bad and nauseous. We'll find out tomorrow.

Another thing we need to have checked is a strange shaking that she has been having. Shaking is a normal side-effect of the cyclosporine that she takes to prevent Graft-Versus-Host Disease -- but it is normally a sign of having a bit too much of it. The weird thing is that the dose was reduced last week down to a pretty low level. I can't imagine that she's on the high side in her blood stream. Again, we should find out tomorrow.

Adam started taking antibiotics for his ear infection last night, and he seemed to be doing better today. But when he went to bed tonight, he said that his ear was hurting like it did yesterday. Poor guy.

Jenny Sutton brought us a mexican casserole yesterday, and Shay Seaman brought us a poppy-seed chicken dinner. Thanks for helping us out... it's been one of those weeks!

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)

Late

It's late, and I just have time for a quick update. Adam has an ear infection, and got antibiotics at the doctor today. Krista had an OK day; not real energetic, but not as bad as she had been. Maybe more tomorrow...

O LORD my God, I called to you for help and you healed me.
(Psalm 30:2)

Wednesday, May 20, 2009

Provisions

Krista had a rough day starting out. The stomach pains and nausea were so frustrating to her she thought it might never end. But I prayed with her through it and by the late afternoon when I had to go into work, she was feeling much better. When she feels better, she sometimes gets random bouts of extreme hunger that come out of nowhere and must be satisfied quickly or she gets nauseated. It's the strangest thing.

Adam's fever broke this morning, but he still had a stuffy nose and wasn't feeling recovered. He rested all day, except for taking a bath tonight. When I put him to bed tonight, though, he felt warm. I took his temperature and it was back up to 101F. Trevor has been fine, so he was able to go to park day with the Martons. On my way out to work, our neighbor Michelle stopped me and gave me a newspaper article on MasterCare Home Cleaning Services in Goleta. According to the article, MasterCare has a program to help women with cancer by "arranging house cleaning at no charge". They require certification from an oncologist, but other than that there are no restrictions. That sounds fantastic! I'll give them a call as soon as I can to see how it works. Linda Kitt brought us taco dinner tonight, along with a whole bunch of extra staples. I was so relieved because I ended up working until almost 7 p.m. and was able to get everyone fed really quickly. God bless you all! These things all help make things go so much better.

[Jesus speaking] "Consider how the lilies grow. They do not labor or spin. Yet I tell you, not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today, and tomorrow is thrown into the fire, how much more will he clothe you, O you of little faith! And do not set your heart on what you will eat or drink; do not worry about it. For the pagan world runs after all such things, and your Father knows that you need them. But seek his kingdom, and these things will be given to you as well."
(Luke 12:27-31)

Monday, May 18, 2009

More Challenges

The nausea Krista had last night didn't end up sending her to the emergency room. Still, it was a bummer that she was feeling so bad because we had planned to go out to her favorite Chinese restaurant as a belated Mother's day celebration for my mother. Instead, we changed it to Chinese take-out celebration. Krista wasn't able to join us and, since she didn't have any dinner last night, she woke up hungry at 4:30 a.m. After I heated up some dinner leftovers for her, I heard Adam calling me from his bedroom. He said he felt hot and had a sore throat. I checked his temperature and it was 102.3F. His sore throat faded, but the fever stayed at 101F throughout the day.

Mom was scheduled to leave today, but with Krista and Adam feeling bad she wasn't sure if now was the time to leave. I took Krista to the lab to test how her kidneys were doing after Friday's saline flush, but we still haven't heard back any results. That didn't make her decision any easier. In fact, I think it was pretty hard on her to feel so helpless to make things better here. The truth is that Mom was a huge help, but there is so much of this recovery that is beyond our control. I've fully accepted the situation as a long-term war and I know that God is going to restore her, and I have to keep that perspective to be able to ride out the ups and downs. But I often forget that it's a whole other challenge to be in on the battle for a shorter time. Mom ended up going home in the afternoon, but we were grateful for all her help, for however long we could have her.

Krista continues struggling with nausea and generalized pain. Alyssa took her to their bible study tonight, but it was pretty hard on Krista to deal with the stimulus. I started noticing today that she would sometimes have to take unusually deep breaths. Krista said that she does this when she gets heart palpitations. I'm going to ask the doctor about that when they call with the results from the labs.

We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the LORD grant all your requests.
Now I know that the LORD saves his anointed;
he answers him from his holy heaven
with the saving power of his right hand.
(Psalm 20:5-6)

Sunday, May 17, 2009

Back In The Saddle Again

I had a really great time at the Believer's Edge men's retreat this weekend. Aside from the resting and relaxing, it was a really valuable time for me as the goal was to get men activated in their calling to summit the seemingly impossible mountains in our lives. So I'm back to my calling, ready to take it on again. Thanks Tom, Johnny, Bob and all the rest of the crew for letting me be there!

Here's what happened since my last post....

On Friday, Mom drove Krista to UCLA for her regularly scheduled appointment. They ran the regular blood tests and found that her kidney-related labs were a little high. Most likely this was because of an alergic reaction to the IV antibiotic she had been getting: vancomycin. Such reactions can cause horrible nausea like she's been having, too. To fix the problem, she needed to flush her kidneys out with some saline water. They connected her to an IV drip for a few hours, and afterward she felt better. Her and Mom didn't get back to Santa Barbara until 9:30 pm, though!

On Saturday morning when I talked to her, Krista was not having any nausea but she complained of a feeling of "internal pressure" that was causing great discomfort. Mom tells me that overall, though, she had a much better day Saturday (though Krista says she felt like a bulldozer ran over her).

Today, Krista felt good enough to go to church for the first time since her transplant! I was still at the retreat, so I didn't get to see it -- but Mom says that she did really well with it. When I got home, Krista was really hungry. We talked about how things had gone and what foods were sounding good to her now. We tried a couple of them out, but apparently chips and salsa was not a good choice, though she said it sounded good to her at the time. It came back up about an hour later and she's been dealing with nausea the whole evening. We are out of her anti-nausea medicine until the beginning of June (because insurance won't cover a refill until then), so I hope that this doesn't turn into another late-night emergency room visit to stop the vomiting. So far, she's been able to keep down a few sips of water for an hour. We're testing out some chicken broth next. Come Lord Jesus and heal this sick child of yours that you love so much!

"When Jesus landed and saw a large crowd, he had compassion on them and healed their sick."
(Matthew 14:14)

Thursday, May 14, 2009

Ready To Pause

Krista's nausea continued today, especially in the morning, but she still managed to have a better day than yesterday. She didn't eat much during the day; a little here, a little there. This evening, though, I'm relieved to see her being hungry.

We're ramping up to do some things we haven't tried before. Krista is going to UCLA tomorrow, but instead of me taking her, my mother is going to take her. I'm a little nervous to let go of being there, just because I've been overseeing everything the whole time. Krista says that she'll do fine, though. I can't be there because I'm going to the men's retreat in Ojai, so I wouldn't have enough time to take her and get back to make it there in time. The kids will be at the Delforno's for a long awaited playdate with Ryan.

Since I'll be away at the retreat, I most likely won't be able to post to the blog over the next few days. So, please continue to pray for Krista -- especially that she would do well enough over the weekend that she won't need any extra medical care.

I lift up my eyes to the hills —
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip —
He who watches over you will not slumber;
indeed, He who watches over Israel
will neither slumber nor sleep.
The LORD watches over you —
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The LORD will keep you from all harm —
he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore.
(Psalm 121)

Wednesday, May 13, 2009

Hidden Strength

Last night's nausea didn't go away until 4:30 am. At that point Krista woke up, ate some crackers, and took her dinner medicines that she skipped last night. When I woke up in the morning, she told me what happened with her medicines. I worked out when she should take her medicines today so that they would be evenly spaced out.

The good thing is that Krista seemed to have a little easier time today. She still slept quite a bit, but when she was awake she looked more lively to me. She also said that when she took a bath, she got up without having to go on all fours. That is pretty amazing that she has gotten stronger even laying around that past two weeks. Actually, that's not fair... she's been getting up regularly, and it's probably using similar muscles to getting out of the tub. Tomorrow's another bactrim day, so I don't suspect she'll be feeling any better than today. She's already started to feel worse this evening.

Mom has been such a big help. In addition to helping out with the kids and food and cleaning, she did a bunch of laundry today and changed our sheets. Yesterday, she even swept the ash off our patio. Thanks Mom! Also, thanks to the Suttons for the Lemon Chicken dinner!

The LORD is my strength and my song;
He has become my salvation.
He is my God, and I will praise Him,
my father's God, and I will exalt Him.
(Exodus 15:2)

Tuesday, May 12, 2009

More Of The Same

There hasn't been any real improvement in Krista's condition since the IV antibiotics stopped. She hasn't been as sleepy, but the pain and nausea are still quite strong. She was taking bactrim today, and that can add to the bad feelings. Tomorrow's regiment is considerably lighter than it has been in a long time. I hope that will help her feel better.

I went into work in the afternoon again while Mom watched Krista and the boys. Linda Kitt brought a lasagna dinner while I was at work. I think Krista was too nauseated to eat, but the rest of us really enjoyed it. Thanks Mom and Linda!

In you, O LORD, I have taken refuge;
let me never be put to shame.
Rescue me and deliver me in your righteousness;
turn your ear to me and save me.
Be my rock of refuge,
to which I can always go;
give the command to save me,
for you are my rock and my fortress.
(Psalm 71:1-3)

Monday, May 11, 2009

Wrap Up

Our kids finished up the semester at Artios Academies, and today they had an end-of-year program which was really neat. All the students demonstrated projects they had worked on -- performing music, drama, speeches. They showed movies they put together and displayed history-influenced artwork. Krista really wanted to be there for it, and even though she wasn't feeling good we all went. Everyone was glad to see her out, and Laura Teel even went out to get her a snack to help settle her stomach. Krista couldn't make it through the whole program, but she really enjoyed what she saw. The kids wanted to stay, so they came home with the Steffens. Thanks for helping us out last minute like that!

My mother came up from Carlsbad today. Traffic was unusually good, so she got here in record time. I'm so glad to have her up again, because it freed me up to take care of some things at work that I couldn't take care of remotely. I went in late, but managed to get it all done -- at least the work for today. Thanks Mom!

Krista had her last IV antibiotic tonight. I can't wait to see her start to improve. That medicine has just wiped her out so bad. I suppose it may take a day or so to adjust out of it -- and tomorrow is another bactrim day, so that might make the change harder to notice. You can all pray for her to feel better and stronger.

Give ear to my words, O LORD,
consider my sighing.
Listen to my cry for help,
my King and my God,
for to you I pray.
In the morning, O LORD, you hear my voice;
in the morning I lay my requests before you
and wait in expectation.
(Psalm 5:1-3)

Sunday, May 10, 2009

Mother's Day

Happy Mother's Day! The boys surprised Krista this morning with bunches of flowers that we picked up at Costco yesterday. The trick was trying to conceal it from Krista, which ended up not being so difficult since Krista was so sleepy most of the day. She is taking IV antibiotics for the staph infection, but they make her nauseated so she also takes antinausea medication, and that makes her drowsy. It's not the best condition for her, as it interferes with her ability to exercise regularly. But it's going to be a short-lived condition. Tomorrow should see the last doses of the IV antibiotic.

My mother is also coming back up here tomorrow. That will be be very helpful as it has been difficult with Krista's sleepiness to be able to make it into work. Now that many of the mandatory evacuation areas have been downgraded, my office should be reopened. I've already heard from some friends that they are back in their houses. The fire is supposed to be 65% contained tonight, with full containment expected Wednesday if all goes well. May God grant the firefighters more favor, as the weather forecasters are expecting temperatures and wind to increase and humidity to decrease starting tomorrow.

Hear my prayer, O LORD;
listen to my cry for mercy.
In the day of my trouble I will call to You,
for You will answer me.
Among the gods there is none like You, O Lord;
no deeds can compare with Yours.
All the nations You have made
will come and worship before You, O Lord;
they will bring glory to Your name.
For You are great and do marvelous deeds;
You alone are God.
(Psalm 86:6-10)

Saturday, May 9, 2009

Smoke Down

There was not much to report today, thankfully. Krista slept most of the day. I took the kids out to do some grocery shopping.

While we were out, we saw some friends who were surprised that we were still in town with all the smoke. Krista is very sensitive to chemical smells and smoke, and we probably would have evacuated under other circumstances just to get out of the smoke. But we have kept the house closed up and ran our air filter constantly to remove any smoke that made it in the house. The house did get pretty warm, but not unbearable -- especially with a fan blowing on us.

Today was a much cooler day than it had been. There's been a good marine layer that came in that has helped the firefighters get up to 40% containment. Tomorrow is expected to be similar. The news has been saying that Mother Nature has been helping the effort, but I think it would be more correct to say that Father God has answered the prayers of His people.

For even if there are so-called gods, whether in heaven or on earth (as indeed there are many "gods" and many "lords"), yet for us there is but one God, the Father, from whom all things came and for whom we live; and there is but one Lord, Jesus Christ, through whom all things came and through whom we live.
(1 Corinthians 8:5-6)

Friday, May 8, 2009

100

Today was Krista's 100th day after the transplant, and we had a surprise to help us celebrate it quite appropriately. Cheryl Giordani brought a Fourth-of-July styled barbeque meal -- burgers, baked beans, coleslaw, corn on the cob, watermelon, and cookies -- and a bag full of cards and goodies that she had collected from our friends. All of it had a 100 theme: cards with 100 miniature butterfly cutouts, 100 M&M's, 100 almonds for each of us, 100 Hershey's Kisses, and more -- all of it wonderfully encouraging. Thank you all for the very kind thoughts!

Krista managed to surprise me, also. Without my knowing it, she arranged for my mother to come up next weekend so that I could go to the men's retreat with our church. I couldn't imagine going otherwise since I have been on duty for the longest time -- and Friday she is supposed to go to UCLA for her regularly scheduled office visit. But Mom said that she would take her there -- and the church is giving me a scholarship for the retreat. I just can't believe it. What will I do without responsibilities?

The anniversary marks a new phase of sorts for Krista's recovery as well. It means the end of certain medicines, in Krista's case that means IVIG. She also is done with Medrol which has been ramping down since she began taking it to stop the Graft-Versus-Host Disease (GVHD) rash. If it returns after this point, it would be much more likely to be a long-term battle. There has been no sign of the GVHD rash returning so far, and now it will be up to the non-steroidal immunosuppressants to keep it at bay.

I forgot to mention yesterday that Loa Wintz helped us out watching the kids while Krista had her urology appointment yesterday. It was rather short notice for us to call her, but it happened to be a good time for her. The kids enjoyed playing legos and cards with her. Thanks for the help Loa! By the way, we haven't heard any news about the sample the urologist took. No news is good news in this case.

The TV news has been busy all day reporting on the Jesusita fire, which is still going pretty much out of control with only 10% containment. They were predicting another nightly sundowner, but there hasn't been much sign of one; it was only 57 degrees in Santa Barbara at 10 pm. That is hopefully good news as it is still spreading west toward Goleta and east toward Monticito (where it is still 71 degrees), and there were fears that it might crest the peak and start heading out toward Santa Ynez. It was snowing ash at our house most of the day. Krista said it was like living in a snow globe that had been shaken. We are still not in any of the danger areas, but so many of our friends are now in the mandatory evacuation zone or the warning zone -- and some may have lost their dwellings.

Who is like the LORD our God,
the One who sits enthroned on high,
who stoops down to look
on the heavens and the earth?
He raises the poor from the dust
and lifts the needy from the ash heap;
He seats them with princes,
with the princes of their people.
He settles the barren woman in her home
as a happy mother of children.
Praise the LORD.
(Psalm 113:5-9)

Thursday, May 7, 2009

Scanned And Waiting

Krista continued to get her IV antibiotic infused here at home. She's half way through the 10-day course. Today she felt better than usual because of the anti-nausea she started taking regularly. She's using generic Odanestron ODT which disolves on the tongue, but the particular variety of this generic has a horrible taste to it. We have a refill coming with the name-brand Zofran ODT, but it won't be available until tomorrow morning.

The urology scan happened this afternoon. Krista was very nervous about how painful it might be, but said afterward that it was roughly equivalent to getting a pap smear. We both got to watch the procedure on a monitor, as the camera went into bladder. It's amazing how clear her bladder was -- very smooth with some red splotches that were clearly not normal. The most likely explanation for this is that it is effects of the chemo, but there is a small possibility that it could be a particular type of bladder cancer. I have forgotten the name of that type of bladder cancer, but that variety emits cells into the urine. The doctor took a sample of the urine near the blemish for analysis. This is just a precaution, as it would be very rare, though not unheard of, for cancer to develop. If the test comes back negative, then they'll just wait for the blemishes to heal and have her check back in a couple of months to do another scan.

The Jesusita fire has spread considerably, almost spanning the areas unburned by the Gap and Tea fires last year. Highway 154 is closed between the 101 and Painted Canyon Road at the top of the pass. We can see flames on the mountain from the window in our living room. Fortunately, we're still not in the danger area, but we are starting to smell smoke when wind blows our way. It's another really hot night, 80 degrees at 10:00 pm. Catherine Short brought us a great looking turkey dinner, though with the heat we didn't want to use the oven. We'll put it in the freezer to make when it's cooler. Thanks Catherine!

Your righteousness reaches to the skies, O God,
You who have done great things.
Who, O God, is like You?
Though You have made me see troubles, many and bitter,
You will restore my life again;
from the depths of the earth
You will again bring me up.
You will increase my honor
and comfort me once again.
(Psalm 71:19-21)

Wednesday, May 6, 2009

IVIG No More

It's hard to believe, but Krista's last IVIG dose was today. That schedule has been going for so long, it feels strangely open. We are only going to UCLA every other week, now, and on the off weeks we're going to need to go to get labwork done at the local lab.

It's not that there's no more home health right now, though. Krista is still getting IV antibiotics twice a day, morning and evening, until at least Monday evening. The antibiotic dose is very high, and it is regularly causing Krista to develop nausea around 4 pm. I called UCLA about this, and they said that it is a side-effect of the antibiotic. She needs to start taking an anti-nausea regularly instead of as its needed. It's very important to keep fluids down, and have small meals regularly, so she doesn't end up in the ER again.

The Jesusita fire is going crazy. It was 84 degrees just before 9 pm, winds blowing strong, constantly changing direction. From the main street near our house I could clearly see the enormous flames shooting up the mountainside (in full daylight even), and the smoke is incredibly thick. We are not in a danger area, but many people including two in my group at work are in the mandatory evacuation zone. May God have mercy on those who are affected by this terror.

Therefore let everyone who is godly pray to you
while you may be found;
surely when the mighty waters rise,
they will not reach him.
You are my hiding place;
you will protect me from trouble
and surround me with songs of deliverance.
(Psalm 32:6-7)

Tuesday, May 5, 2009

ER Light

Krista was having a real hard time keeping anything down last night. She didn't have a fever, and there was no blood in what was coming out, so I knew that there was no need to call UCLA about her problem. She was clearly dehydrated and, though water didn't sit well, ice chips were doing OK. I thought that with the ice chips she might pull through.

After I put her to bed, I started getting her medicines ready for the next day as usual. but then I noticed that she hadn't taken any of her dinner or bedtime medicines. Then I remembered that she was having increased blood pressure earlier in the day and that she was going to wait until dinner to take her blood pressure medicine to take care of it. But it never happened, and by the time I recognized it, her blood pressure was way to high -- and she wouldn't be able to keep down a pill! Plus, she was severely dehydrated and needed fluids.

So we packed up and got out of the house around 1:30 am, and headed off to our local emergency room. Fortunately, it was a slow night for them, and we got right in. I've never had that happen before! They hooked her up with saline right away while they spent the next few hours running blood tests, and due to a hidden fever, they ran a test for influenza which turned up negative and more blood cultures too. In the end, they really didn't come up with anything conclusive, so they admitted her to 6 Central for the night for observation and to continue giving her fluids. She was feeling better with the extra hydration so they let her go home in the afternoon...shortest stay ever.

By that time, the newly stoked Jesusita fire in the mountains behind Santa Barbara was spewing smoke all over the city. It's been really windy, dry, and hot -- all of which make fires much more likely. Terry McElwee is Division Chief of the Montecito Fire Department. His wife, Mia, was scheduled to bring us a meal tonight. I was expecting that might not happen with the fire going on, but she came through -- with Mexican Chicken Tortilla Soup for Cinco de Mayo. Thank you Mia, and may God give Terry insight and help all those firefighters get the fire out quickly and safely!

But now, this is what the LORD says—
He who created you, O Jacob,
He who formed you, O Israel:
"Fear not, for I have redeemed you;
I have summoned you by name; you are mine.
When you pass through the waters,
I will be with you;
and when you pass through the rivers,
they will not sweep over you.
When you walk through the fire,
you will not be burned;
the flames will not set you ablaze.
(Isaiah 43:1-2)

Monday, May 4, 2009

Rapid Backpedaling

It's strange to get start the day off with a nurse visit at home, but we're getting a little used to it. I have to take the antibiotic bag out of the refrigerator at 6 am, and then I can go back to sleep for a little. Krista seemed to sleep through the dose this morning, though she was up for at least some of it. The saline flush seems to cause her a lot of pain that she never had when she had the Groshong line in.

Krista slept in while I cleaned up the house after the kids went to Artios. Krista woke up and rested on the couch while I went to get her prescriptions refilled. She seemed to be doing fine, so I got lunch ready for her so I could step out to work for a while. I called her regularly to make sure she was doing OK, and Alyssa came over around 3 pm to hang out and let the kids play together. That's why I was surprised around 5:30 pm to hear that she wasn't feeling good, and a short time later to hear that she had thrown up. I got home as quick as I could -- and Marilyn had shown up early to get the evening antibiotic going. Krista eventually got some sleep while the antibiotic went in. Her stomach stayed upset into the evening, but at least she got some rest. If she starts up again, I'll need to take her in to the emergency room -- but for now that doesn't look necessary.

[Job speaking] "For sighing comes to me instead of food;
my groans pour out like water.
(Job 3:24)

Sunday, May 3, 2009

Treasure Hunt

Krista continued to have generalized pain today and there's a growing pain at her IV site. So far, there's no sign of any problems with the IV; it's probably just on a sensitive area. With all the neuropathy Krista has, just about everything is a sensitive area. Still, she is doing very well overall, and managed to get in and out of the bath easily all by herself.

We spent most of day resting (a rare and much needed event for me), and we all watched Saving Sarah Cain together. It's neat how the boys enjoy watching family-friendly dramas, though this one may have been a bit long and serious for Trevor's attention span. But both boys loved how the Amish children showed their appreciation for a meal by burping afterward. I don't know if that's an accurate depiction, but it did get a good laugh.

Friday night, when Trevor had his sleep-over, he got to have a successful experience with geocaching, a world-wide high-tech treasure hunt hobby in which enthusiasts hide a box containing a log page and some nicknacks, and then post the global coordinates of the treasure for other enthusiasts to find it. I wanted to see what it was like, so I signed up with geocaching.com to see if there were any treasures hidden near our house. One of the first ones listed was just a few blocks from our house, so Adam, Trevor, our neighbor Sean, and I walked over with my portable GPS to see if we could find it. No such luck -- but it was fun looking. The boys wanted to try again, so we went back home to see if there was another nearby. There was -- just a little further than the first one -- and this time Krista wanted to join in. She walked to the end of the block, and then we wheeled her the rest of the way. We didn't find it, but we did find a bag of broken toys and trash stuck in a bush nearby which I threw away. I found out later that this is a practice that geocachers encourage, calling it CITO (Cache In Trash Out). I think that's neat -- turning a frivolous hobby into something that actually helps the community. It's going to take some more practice to be able to actually find one of these treasures, though.

[The LORD speaking] "You will seek Me and find Me when you seek Me with all your heart."
(Jeremiah 29:13)

Saturday, May 2, 2009

Surprise

My predictions are getting better: today was a rough day for Krista. There was lots of aching, and she needed to rest most of the day. It's not surprising given how much activity she had yesterday. Hopefully she'll feel better in a day or two.

Krista started getting IV antibiotics today. We had quite a surprise when we found out that the administering nurse was our friend Marilyn from Buellton. We haven't seen her since we moved three years ago. Krista's cough was a bit "scratchy" in her upper lungs for some reason today. Marilyn and the nurse coordinator were concerned about pneumonia (even though antibiotics should cover that), and recommended some breathing exercises in addition to her twice a day dose of antibiotics. It looks like we'll be seeing a lot more of Marilyn over the next ten days.

We had chatted with Jennelle previously on email, but today we actually got to meet her when she brought a taco dinner over for us. Tom bought some more baseboard material to finish up what he had been working on. This afternoon, I took the kids to see the Artios production of The Princess And The Pea. They both enjoy the regular Artios drama class so much they want to join their drama club next year. It's great to have their interest peaked!

But I will sing of your strength,
in the morning I will sing of your love;
for you are my fortress,
my refuge in times of trouble.
O my Strength, I sing praise to you;
you, O God, are my fortress, my loving God.
(Psalm 59:16-17)

Friday, May 1, 2009

Active Day

Krista took a break from walking exercise yesterday so today she could show off her walking ability for the doctor at UCLA today. I wheeled her into the waiting room, but after that she was up on her own. She did great with it, too.

The routine at the visit was a little different than usual because she just had her labs done yesterday. It was nice not to have to give a sample today; without the line, samples require a poke, but there was no poking today.

The doctor said that Krista was doing really well. He cut her medrol dose in half again and said that she only need take that for one week more; after that she can stop it altogether. He was concerned about the oral antibiotic that she got from the hospital. Apparently, even though the bacteria is reactive to the antibiotic, the oral antibiotics are not capable of saturating the body with a sufficient amount to kill the infection in hard-to-get-to areas like valves and bone. They often see people on orals get hidden infections that show up months later and get so rooted that it stays with them their entire lives. He ordered daily IV antibiotics for Krista, instead. He didn't want to put a portacath in, since it is so similar to the line that got infected. She's going to get a new short-term line every three days for the next couple of weeks. That should be sufficient for getting the daily hour-long IV antibiotic dose. The good thing is that all this is going to be done from home -- starting tomorrow.

As we reflected on the upcoming 100-day milestone, the doctor beamed that Krista is going to be one of the "poster children" of the stem-cell transplant realm. Krista joked with him that he probably meant what not to do with a transplant. But he was serious and reminded her that she almost died at one point with a liver that was "mush" -- and now she's doing great.

While we were at UCLA, Tom got to take the boys to a taiko drum performance at the Granada Theater with a bunch of fellow homeschoolers. Afterward, Tom finished up nailing in the baseboards he cut up yesterday (and it looks great now), while the boys went to the Marton's home to play. In the evening, Adam was invited to a dinner-and-game gathering at the Suttons house, playing a role playing game that Randy created. Trevor wasn't old enough to play, but the Marton's invited him to have a sleep-over at their house. So, we had a kid-free evening and Krista used the little energy she had left over to help me cook up two recipes she had her eye on for a while: Salmon Croquets and Creamy Farfalle with Mushrooms and Asparagus. She made the Croquets! I think she's pretty wiped out now, but she was so happy to be able to do stuff -- even if it's just for a day.

The cords of death entangled me,
the anguish of the grave came upon me;
I was overcome by trouble and sorrow.
Then I called on the name of the LORD:
"O LORD, save me!"
The LORD is gracious and righteous;
our God is full of compassion.
The LORD protects the simplehearted;
when I was in great need, He saved me.
Be at rest once more, O my soul,
for the LORD has been good to you.
For You, O LORD, have delivered my soul from death,
my eyes from tears,
my feet from stumbling,
that I may walk before the LORD
in the land of the living.
(Psalm 116:3-9)