Krista had her IVIG dose today. This was the first time without an existing line. She was pretty nervous when it came time to put the temporary line in, but I prayed over her while it went in and she later said that it barely hurt at all.
The boys watched as she got the IV put in and the blood drawn. They were really interested in what was going on and didn't think it was gross at all. I decided to turn it into a homeschool learning moment. They helped me take the specimen to the lab, and we talked about the different parts of the blood and how they separate the parts by spinning the test tubes. When we got home, we pulled out the kids anatomy book to show them the arteries and veins, and how the heart pumps blood throughout the body. We even worked in a game/experiment to show them how hard the heart works every minute. And Tom found a website that had some good descriptions of the arteries leading to the heart. By the way, Krista's labs came back good on everything, though the bilirubin level was a little on the high side (it goes up and down periodically).
I had to go in to work in the afternoon. While I was gone, Tom cut up some of the baseboard I haven't been able to get to, and it's ready to be nailed in maybe tomorrow. The Bramsons brought a chicken casserole that tasted like fried chicken -- how did they do that? God bless you all for helping. All little things to do around here can feel really overwhelming at times.
From heaven the LORD looks down
and sees all mankind;
from his dwelling place He watches
all who live on earth -
He who forms the hearts of all,
who considers everything they do.
(Psalm 33:13-15)
Hope Notes from Krista and Mike is a journal of encouragement as this Christian mom, and supportive husband and caregiver, face the ups and downs of a stem cell transplant after recurring leukemia. Start at the beginning by clicking September 2008 in the archives and reading forward. It's not always pretty, but it's real. We pray you will be blessed by these passages in some way.
Thursday, April 30, 2009
Wednesday, April 29, 2009
Adjusting
It's good to be back, but it always takes some some getting used to the change. I had a terrible sleep last night, waking up quite a bit, and Krista had a tough morning. She was aching and having stomach trouble again, but these were normal symptoms for her at this point.
Krista's father, Tom, drove up from Phoenix this afternoon to help out. He'll be here until Sunday. Tom got right to work and trimmed up our backyard very nicely. Thanks for helping us out!
It's been a while since Krista's been able to do much walking, being connected to an IV in the hospital the past few days. She was getting up to use the commode, but the danger is that she might start losing muscle mass again. Before the hospital visit, Krista was walking daily to our mailbox and back. Today, she managed to make it two-and-a-half houses down the street and back! I think that's amazing considering the recent inactivity. We followed it up by giving her some Physique to help minimize post-exercise muscle pain. This evening Krista has been feeling much better.
The Suttons brought us beef stroganoff for dinner tonight. Krista was able to have a nice visit with Jenny before she left. The meal was really good, and made it much easier for me to get to finish up some work later in the evening. Hopefully we'll get a better sleep tonight to get a better start on the day tomorrow.
To the LORD I cry aloud,
and he answers me from his holy hill.
I lie down and sleep;
I wake again, because the LORD sustains me.
(Psalm 3:4-5)
Krista's father, Tom, drove up from Phoenix this afternoon to help out. He'll be here until Sunday. Tom got right to work and trimmed up our backyard very nicely. Thanks for helping us out!
It's been a while since Krista's been able to do much walking, being connected to an IV in the hospital the past few days. She was getting up to use the commode, but the danger is that she might start losing muscle mass again. Before the hospital visit, Krista was walking daily to our mailbox and back. Today, she managed to make it two-and-a-half houses down the street and back! I think that's amazing considering the recent inactivity. We followed it up by giving her some Physique to help minimize post-exercise muscle pain. This evening Krista has been feeling much better.
The Suttons brought us beef stroganoff for dinner tonight. Krista was able to have a nice visit with Jenny before she left. The meal was really good, and made it much easier for me to get to finish up some work later in the evening. Hopefully we'll get a better sleep tonight to get a better start on the day tomorrow.
To the LORD I cry aloud,
and he answers me from his holy hill.
I lie down and sleep;
I wake again, because the LORD sustains me.
(Psalm 3:4-5)
Tuesday, April 28, 2009
All Day Exit
It took all day, but we finally made it out of the hospital. The results of the culture came back just before noon. The infection was due to a less hearty variety of staph, so it wasn't necessary to put a Portacath in, and oral antibiotics would be sufficient for treatment.
The wheels of progress often times move slowly in a hospital though. The seemingly simple task of ordering the antibiotics took until around 5 p.m. We packed up our stuff, got Krista unplugged from the IV, and discharged by 6:30 p.m. And fortunately, traffic wasn't too bad, so we were able to get home, pick up the kids, and get them in bed by 9:30 p.m.
The day was further complicated by the fact that both our cell phones were running seriously low on batteries because we were in a rush to get to the hospital and forgot to bring the chargers. Somehow we managed to have just enough to let Krista's father know what was going on, make sure the kids were taken care of, and figure out where to pick them up before they both were completely drained. Phew! That was close! Thanks to the Steffens for watching the kids, and to Cheryl, the Veroefs, and Lori for working it out to have dinner ready for us when we finally got home.
The end of a matter is better than its beginning,
and patience is better than pride.
(Ecclesiastes 7:8)
The wheels of progress often times move slowly in a hospital though. The seemingly simple task of ordering the antibiotics took until around 5 p.m. We packed up our stuff, got Krista unplugged from the IV, and discharged by 6:30 p.m. And fortunately, traffic wasn't too bad, so we were able to get home, pick up the kids, and get them in bed by 9:30 p.m.
The day was further complicated by the fact that both our cell phones were running seriously low on batteries because we were in a rush to get to the hospital and forgot to bring the chargers. Somehow we managed to have just enough to let Krista's father know what was going on, make sure the kids were taken care of, and figure out where to pick them up before they both were completely drained. Phew! That was close! Thanks to the Steffens for watching the kids, and to Cheryl, the Veroefs, and Lori for working it out to have dinner ready for us when we finally got home.
The end of a matter is better than its beginning,
and patience is better than pride.
(Ecclesiastes 7:8)
Monday, April 27, 2009
More Delays
We might be mistaken as ranch hands near Soledad taking care of soft rabbits because once again, like mice and men, our best laid plans have gone awry. We had planned on returning home today, but it wasn't meant to be. There was a good reason for the change at least. It turns out that the doctor's primary theory of what caused the infection wasn't right.
The runner-up theory was the winner: the Groshong line that has been in since September became infected, causing the fever. The doctors had a hard time identifying the cause because of a large number of white blood cells they found in the urine when she first checked in. They followed the train of thought that there was a urinary tract infection, but it didn't make sense that the urine white blood count dropped in the following days. They continued to find bacteria in the blood samples, however. Once they realized that the elevated reading was probably due to the urethra "thing" that was irritated by the urological exam, they were able to narrow down the cause to the line. Ports and lines are notorious for getting infected, and they never like to leave them in longer than is necessary. Krista's was still in for convenience. She is still getting weekly IVIG transfusions and will continue to get them until 100 days after the stem-cell transplant. That day is May 8.
There were now only two things they needed to do before they let Krista go home. The first was to get the port out. That's pretty much the only way to deal with an infected port. Monday is usually booked for vascular surgery, but somehow they arranged to get Dr. Julie O'Connell (sp?) to Krista's room for a late-afternoon procedure. Krista was very nervous about the procedure because the Portacath she had from the first round of leukemia was not only excruciating to get out, but she had ongoing pain for months after it came out. Fortunately, that was not the case with this line. The doctor gave her lots of local anesthesia, and though she had to work it quite a bit, the line came out without much pain at all.
The second thing that the need to do is get us a prescription for antibiotics to take home with us. In order to do that they have to know the specific kind of bacteria it is that infected the port. So far they are only able to identify it as "generalized staph", but they need to find out if it is the kind that can be treated with oral antibiotics or if it's the tougher variety that needs IV antibiotics. The oral antibiotics are easy, but the IV ones are more complicated. I can administer the IV antibiotics at home, but she needs to have a PICC line put in first. The lab results won't be back until the morning, so they won't be able to schedule the PICC line until tomorrow if they need it. Putting it in is not a long procedure, but it may take some time to get a doctor. So though, we should be able to come home tomorrow, we're not sure when that will be.
The LORD your God is with you,
He is mighty to save.
He will take great delight in you,
He will quiet you with his love,
He will rejoice over you with singing.
"The sorrows for the appointed feasts
I will remove from you;
they are a burden and a reproach to you.
At that time I will deal
with all who oppressed you;
I will rescue the lame
and gather those who have been scattered.
I will give them praise and honor
in every land where they were put to shame.
At that time I will gather you;
at that time I will bring you home.
I will give you honor and praise
among all the peoples of the earth
when I restore your fortunes
before your very eyes,"
says the LORD.
(Zephaniah 3:17-20)
The runner-up theory was the winner: the Groshong line that has been in since September became infected, causing the fever. The doctors had a hard time identifying the cause because of a large number of white blood cells they found in the urine when she first checked in. They followed the train of thought that there was a urinary tract infection, but it didn't make sense that the urine white blood count dropped in the following days. They continued to find bacteria in the blood samples, however. Once they realized that the elevated reading was probably due to the urethra "thing" that was irritated by the urological exam, they were able to narrow down the cause to the line. Ports and lines are notorious for getting infected, and they never like to leave them in longer than is necessary. Krista's was still in for convenience. She is still getting weekly IVIG transfusions and will continue to get them until 100 days after the stem-cell transplant. That day is May 8.
There were now only two things they needed to do before they let Krista go home. The first was to get the port out. That's pretty much the only way to deal with an infected port. Monday is usually booked for vascular surgery, but somehow they arranged to get Dr. Julie O'Connell (sp?) to Krista's room for a late-afternoon procedure. Krista was very nervous about the procedure because the Portacath she had from the first round of leukemia was not only excruciating to get out, but she had ongoing pain for months after it came out. Fortunately, that was not the case with this line. The doctor gave her lots of local anesthesia, and though she had to work it quite a bit, the line came out without much pain at all.
The second thing that the need to do is get us a prescription for antibiotics to take home with us. In order to do that they have to know the specific kind of bacteria it is that infected the port. So far they are only able to identify it as "generalized staph", but they need to find out if it is the kind that can be treated with oral antibiotics or if it's the tougher variety that needs IV antibiotics. The oral antibiotics are easy, but the IV ones are more complicated. I can administer the IV antibiotics at home, but she needs to have a PICC line put in first. The lab results won't be back until the morning, so they won't be able to schedule the PICC line until tomorrow if they need it. Putting it in is not a long procedure, but it may take some time to get a doctor. So though, we should be able to come home tomorrow, we're not sure when that will be.
The LORD your God is with you,
He is mighty to save.
He will take great delight in you,
He will quiet you with his love,
He will rejoice over you with singing.
"The sorrows for the appointed feasts
I will remove from you;
they are a burden and a reproach to you.
At that time I will deal
with all who oppressed you;
I will rescue the lame
and gather those who have been scattered.
I will give them praise and honor
in every land where they were put to shame.
At that time I will gather you;
at that time I will bring you home.
I will give you honor and praise
among all the peoples of the earth
when I restore your fortunes
before your very eyes,"
says the LORD.
(Zephaniah 3:17-20)
Sunday, April 26, 2009
Plans
Krista's fever broke last night. She woke up feeling much better. And with the fever gone, Krista was ready to go home.
The on-call fellow, who wasn't familiar with Krista, was concerned about some things that were in her records from months ago when she was recovering from the liver/kidney failure. He ordered a CAT scan of her liver and kidney to "make sure" they weren't infected. Krista knew that this wasn't necessary, but they were quite insistent.
Shortly after that, Krista's regular oncologist stopped by unexpectedly. He was leaving to go to Washington D.C. again, but wanted to stop in to see Krista. She filled him in on what was going on. He agreed that a CAT scan wasn't necessary and said that if the fever stayed away for 24 hours then Krista could go home. That got Krista's hopes up, and she started making plans in her head.
Unfortunately, the on-call doctors didn't get the message, and they continued to feel that she needed to stay until they figure out what caused the infection. Everyone, including her regular oncologist, agrees that the most likely cause of the infection was from a complication of the urological examination. The on-call doctor is admittedly being excessively cautious because he doesn't know her history -- and her regular oncologist isn't reachable.
Krista has been really frustrated with their unreasonableness, but she's decided to be a good patient and not walk out tonight. She could do that, but it's easier to leave in the morning when she has more energy. The plan is to go in the morning unless they have some new compelling reason to keep her here. There's only one problem with the plan -- there's no prescription for the IV antibiotics she's on right now. Her regular oncologist said that I would be able to administer them at home but I can't do that without a prescription. Once we get that squared away, we should be set to go.
My mother has been with the boys while we've been down here, but she needs to go home to Carlsbad for an event she's responsible for on Wednesday. The boys are staying with the Steffens tonight, and Monica is taking my mother to the train station in the morning. We're not sure when we'll be home, but we'll pick them up from the Steffens when we do. Thanks everyone for helping out with all our convoluted problems!
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."
(Jeremiah 29:11-13)
The on-call fellow, who wasn't familiar with Krista, was concerned about some things that were in her records from months ago when she was recovering from the liver/kidney failure. He ordered a CAT scan of her liver and kidney to "make sure" they weren't infected. Krista knew that this wasn't necessary, but they were quite insistent.
Shortly after that, Krista's regular oncologist stopped by unexpectedly. He was leaving to go to Washington D.C. again, but wanted to stop in to see Krista. She filled him in on what was going on. He agreed that a CAT scan wasn't necessary and said that if the fever stayed away for 24 hours then Krista could go home. That got Krista's hopes up, and she started making plans in her head.
Unfortunately, the on-call doctors didn't get the message, and they continued to feel that she needed to stay until they figure out what caused the infection. Everyone, including her regular oncologist, agrees that the most likely cause of the infection was from a complication of the urological examination. The on-call doctor is admittedly being excessively cautious because he doesn't know her history -- and her regular oncologist isn't reachable.
Krista has been really frustrated with their unreasonableness, but she's decided to be a good patient and not walk out tonight. She could do that, but it's easier to leave in the morning when she has more energy. The plan is to go in the morning unless they have some new compelling reason to keep her here. There's only one problem with the plan -- there's no prescription for the IV antibiotics she's on right now. Her regular oncologist said that I would be able to administer them at home but I can't do that without a prescription. Once we get that squared away, we should be set to go.
My mother has been with the boys while we've been down here, but she needs to go home to Carlsbad for an event she's responsible for on Wednesday. The boys are staying with the Steffens tonight, and Monica is taking my mother to the train station in the morning. We're not sure when we'll be home, but we'll pick them up from the Steffens when we do. Thanks everyone for helping out with all our convoluted problems!
"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart."
(Jeremiah 29:11-13)
Saturday, April 25, 2009
Daddy!
It is among the hardest things in life to make a tough medical decision for another person. I once had to physically restrain my son Trevor while a doctor scrubbed a gash on his forehead for 15 minutes and then applied 14 stitches in two layers -- after the lydecane wore off. I tried to comfort him, but he just kept screaming incredulously at me, "Daddy! Daddy!"
The decision last night to bring Krista down to UCLA because of a fever was like that for me. She was really mad at me for paging the doctor so quickly, setting in motion what for her was unthinkable. She was convinced that the fever was just because she was too hot under the blankets. Even in the hospital, she felt like everyone was making a big deal over nothing. The instruments weren't calibrated right, the temperature was off because she was mad, or the doctors were just wanting to try out stuff on her like a guinea pig. She repeatedly said that she felt like a prisoner here.
Her opinion on the subject didn't change until this afternoon, when she threw up the lunch that should have gone down easy. And the fever got worse. Her urine specimen showed signs of infection, too. Chances are that the urology examination yesterday may have pushed some bacteria around, causing further infection, but there's a few more things that need to be ruled out as well. The doctors have her on two types of antibiotics as a preventative to combat whatever it is, even before they get the detailed results back. At some point, they are going to do an ultrasound of her kidneys and liver to make sure that there's no infection around them. Krista wants to have the urologist back home do the camera-work on her bladder -- maybe that will get her out of here sooner?
How long will we be here? The rule-of-thumb is that she has to go 24 hours without a fever before she can leave. This evening, her temperature was up to 39C (102F), so it looks like Monday's the earliest we could go -- and that may not even be possible.
Today's events have made me appreciate the trust that Jesus had in His Father's plan all the more. He was faced with the unthinkable, too: rejection by not only His creation but by His Father as well. And He was willing to do it, though the decision was clearly not easy:
Jesus went out as usual to the Mount of Olives, and his disciples followed him. On reaching the place, he said to them, "Pray that you will not fall into temptation." He withdrew about a stone's throw beyond them, knelt down and prayed, "Father, if you are willing, take this cup from me; yet not my will, but yours be done." An angel from heaven appeared to him and strengthened him. And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground.
(Luke 22:39-44)
The decision last night to bring Krista down to UCLA because of a fever was like that for me. She was really mad at me for paging the doctor so quickly, setting in motion what for her was unthinkable. She was convinced that the fever was just because she was too hot under the blankets. Even in the hospital, she felt like everyone was making a big deal over nothing. The instruments weren't calibrated right, the temperature was off because she was mad, or the doctors were just wanting to try out stuff on her like a guinea pig. She repeatedly said that she felt like a prisoner here.
Her opinion on the subject didn't change until this afternoon, when she threw up the lunch that should have gone down easy. And the fever got worse. Her urine specimen showed signs of infection, too. Chances are that the urology examination yesterday may have pushed some bacteria around, causing further infection, but there's a few more things that need to be ruled out as well. The doctors have her on two types of antibiotics as a preventative to combat whatever it is, even before they get the detailed results back. At some point, they are going to do an ultrasound of her kidneys and liver to make sure that there's no infection around them. Krista wants to have the urologist back home do the camera-work on her bladder -- maybe that will get her out of here sooner?
How long will we be here? The rule-of-thumb is that she has to go 24 hours without a fever before she can leave. This evening, her temperature was up to 39C (102F), so it looks like Monday's the earliest we could go -- and that may not even be possible.
Today's events have made me appreciate the trust that Jesus had in His Father's plan all the more. He was faced with the unthinkable, too: rejection by not only His creation but by His Father as well. And He was willing to do it, though the decision was clearly not easy:
Jesus went out as usual to the Mount of Olives, and his disciples followed him. On reaching the place, he said to them, "Pray that you will not fall into temptation." He withdrew about a stone's throw beyond them, knelt down and prayed, "Father, if you are willing, take this cup from me; yet not my will, but yours be done." An angel from heaven appeared to him and strengthened him. And being in anguish, he prayed more earnestly, and his sweat was like drops of blood falling to the ground.
(Luke 22:39-44)
Long Night
Krista's urology appointment was today. We both liked the local urologist, who seemed very knowledgeable and thorough. She examined Krista and came to the conclusion that the blood in the urine was coming from old urethra "thing" she dealt with in the hospital. With the low platelets, the damaged area is still prone to bleeding. The pain and frequency of urination is still something of a mystery, but it might be because of cylclophosporide toxicity. The doctor wants to get a camera in to take a look at it, but won't be able to do that until next week. She prescribed two new medicines to see if they help ease the pain and frequency of urination.
After the appointment, Krista felt good enough to get an early lunch out with me -- and after that she still wanted to go. We stopped in at a local sports store and picked up soccer ball for the boys, who managed to destroy or lose their practice balls from the fall. When she got home, she was ready for a few long naps due to generalized aching.
The aching continued through on to the night, despite the new medicines. After dinner she took a bath and then went to bed. Just before 10 pm, she told me that she felt hot and asked me to take take her temperature. It was 38.4 Celcius, or 101.1 Fahrenheit. In the hospital 38.0C or over is a fever, so I looked up the manual they sent home with me to see what I should do about it. She hasn't had a fever since we left, so this was new territory for us. The manual said to page the oncologist for 38.3C or higher, so I paged him and he said that she passed the boundary and had to check into the ER at UCLA. I had to break the news to Krista, who really didn't want to go. Eventually she recognized the need to go, so we packed up a change of clothes and headed out. It's a good thing my mother was still there. She was supposed to leave in the morning. We'll likely be here overnight, and possibly longer. We didn't get here until 12:30am. It's 3:15am when I'm writing this but they've already taken blood, given her an x-ray of her chest, and given her two IV antibiotics. Ah, another long night.
Jesus left the synagogue and went to the home of Simon. Now Simon's mother-in-law was suffering from a high fever, and they asked Jesus to help her. So he bent over her and rebuked the fever, and it left her. She got up at once and began to wait on them.
(Luke 4:38-39)
After the appointment, Krista felt good enough to get an early lunch out with me -- and after that she still wanted to go. We stopped in at a local sports store and picked up soccer ball for the boys, who managed to destroy or lose their practice balls from the fall. When she got home, she was ready for a few long naps due to generalized aching.
The aching continued through on to the night, despite the new medicines. After dinner she took a bath and then went to bed. Just before 10 pm, she told me that she felt hot and asked me to take take her temperature. It was 38.4 Celcius, or 101.1 Fahrenheit. In the hospital 38.0C or over is a fever, so I looked up the manual they sent home with me to see what I should do about it. She hasn't had a fever since we left, so this was new territory for us. The manual said to page the oncologist for 38.3C or higher, so I paged him and he said that she passed the boundary and had to check into the ER at UCLA. I had to break the news to Krista, who really didn't want to go. Eventually she recognized the need to go, so we packed up a change of clothes and headed out. It's a good thing my mother was still there. She was supposed to leave in the morning. We'll likely be here overnight, and possibly longer. We didn't get here until 12:30am. It's 3:15am when I'm writing this but they've already taken blood, given her an x-ray of her chest, and given her two IV antibiotics. Ah, another long night.
Jesus left the synagogue and went to the home of Simon. Now Simon's mother-in-law was suffering from a high fever, and they asked Jesus to help her. So he bent over her and rebuked the fever, and it left her. She got up at once and began to wait on them.
(Luke 4:38-39)
Thursday, April 23, 2009
Blessed
Today was Krista's best day in a week -- and that's amazing because she was taking bactrim today. Her bladder pain was still strong, but she was able to keep it under control with a pain killer. The blood in her urine has increased, though it's not making the urine very red. We're really glad that the urology appointment is tomorrow morning.
Krista's starting to think that there may be a little bit of the GVHD rash coming back. Her nose has been itchy, and there's a few bumps on her heels. The small steroid dose that she is backing off of is now every other day, so we may cut it in half and take it every day to see if that helps. Otherwise, she may need to go back up on the cyclosporine that has been causing the potassium problems. Please pray for the rash not to get worse.
Alyssa took her kids and ours to the County Fair. It sounds like they had a great time. Adam especially liked the bunnies and the magic show. Trevor was excited to see his friend Ryan. Between Mom and I, we've been managing to keep the schoolwork going, but it's hard to keep them exercised, so we're really grateful to have help on outings like that.
I forgot to say that yesterday that when I got home, Krista was feeling lonely. With all the busy-ness around the house, she sometimes just wants someone to sit and talk with her. Just after we talked, our neighbor Lori made a surprise visit, bringing some delicious chocolate covered strawberries. And then after dinner, Becky Hunter came over to bring some TV trays and after they talked for a bit, she also went out to get her a latte from Starbuck's. It really helps Krista to have visitors, to help keep her spirits up as she struggles with all this pain. And it has also been such an incredible help for our family to get dinners brought too. The last few days we've had Pork Loin from the Bakers, Italian Wedding Soup from the Carrs, and Bavarian Mussaka from the Svetlas. God bless you all!
The LORD bless you
and keep you;
the LORD make His face shine upon you
and be gracious to you;
the LORD turn His face toward you
and give you peace.
(Numbers 6: 24-26)
Krista's starting to think that there may be a little bit of the GVHD rash coming back. Her nose has been itchy, and there's a few bumps on her heels. The small steroid dose that she is backing off of is now every other day, so we may cut it in half and take it every day to see if that helps. Otherwise, she may need to go back up on the cyclosporine that has been causing the potassium problems. Please pray for the rash not to get worse.
Alyssa took her kids and ours to the County Fair. It sounds like they had a great time. Adam especially liked the bunnies and the magic show. Trevor was excited to see his friend Ryan. Between Mom and I, we've been managing to keep the schoolwork going, but it's hard to keep them exercised, so we're really grateful to have help on outings like that.
I forgot to say that yesterday that when I got home, Krista was feeling lonely. With all the busy-ness around the house, she sometimes just wants someone to sit and talk with her. Just after we talked, our neighbor Lori made a surprise visit, bringing some delicious chocolate covered strawberries. And then after dinner, Becky Hunter came over to bring some TV trays and after they talked for a bit, she also went out to get her a latte from Starbuck's. It really helps Krista to have visitors, to help keep her spirits up as she struggles with all this pain. And it has also been such an incredible help for our family to get dinners brought too. The last few days we've had Pork Loin from the Bakers, Italian Wedding Soup from the Carrs, and Bavarian Mussaka from the Svetlas. God bless you all!
The LORD bless you
and keep you;
the LORD make His face shine upon you
and be gracious to you;
the LORD turn His face toward you
and give you peace.
(Numbers 6: 24-26)
Wednesday, April 22, 2009
Worked Out
Yesterday's post had to be brief because I had a deadline to meet today at work. I stayed up very late, but got everything done. The main problem was one that was one that we had known about for a long time, but couldn't find a solution for. God brought me just the right answer when I needed it, and the old problem is pretty much eliminated.
This morning our home-care nurse came over to administer the weekly IVIG dose. We're getting close to the 100-day post-transfusion marker, at which point the IVIG doses will end. There's some debate right now as to when the last dose will be. The 100 days ends May 8, and UCLA says that the dose should continue until then. The nurse says that insurance authorized her to continue through next Monday, April 27. UCLA said that they'll get it worked out.
Krista's bladder problem is continuing to get worse. There was a small amount of blood and some tiny blood clots in her urine today, and there were episodes of really intense pain also. The local oncologist finally worked things out with the local urologist, and Krista has an appointment Friday morning. Since the blood was new today, they also took a new urine specimen. Krista was going to take her second dose of bactrim today but didn't; and because she didn't take it she learned that the bactrim wasn't responsible for the strange symptoms she's having. So though it does make her feel yucky, the horrible yucky is just because of adding the regular yucky on top of the bladder stuff. I don't know if that's going to make it any easier for her tomorrow, since she's going to be taking it then.
I will praise the LORD, who counsels me;
even at night my heart instructs me.
I have set the LORD always before me.
Because he is at my right hand,
I will not be shaken.
Therefore my heart is glad and my tongue rejoices;
my body also will rest secure
(Psalm 16:7-9)
This morning our home-care nurse came over to administer the weekly IVIG dose. We're getting close to the 100-day post-transfusion marker, at which point the IVIG doses will end. There's some debate right now as to when the last dose will be. The 100 days ends May 8, and UCLA says that the dose should continue until then. The nurse says that insurance authorized her to continue through next Monday, April 27. UCLA said that they'll get it worked out.
Krista's bladder problem is continuing to get worse. There was a small amount of blood and some tiny blood clots in her urine today, and there were episodes of really intense pain also. The local oncologist finally worked things out with the local urologist, and Krista has an appointment Friday morning. Since the blood was new today, they also took a new urine specimen. Krista was going to take her second dose of bactrim today but didn't; and because she didn't take it she learned that the bactrim wasn't responsible for the strange symptoms she's having. So though it does make her feel yucky, the horrible yucky is just because of adding the regular yucky on top of the bladder stuff. I don't know if that's going to make it any easier for her tomorrow, since she's going to be taking it then.
I will praise the LORD, who counsels me;
even at night my heart instructs me.
I have set the LORD always before me.
Because he is at my right hand,
I will not be shaken.
Therefore my heart is glad and my tongue rejoices;
my body also will rest secure
(Psalm 16:7-9)
Cruch Time
It was another rough day for Krista. She seemed to be recovering from yesterday's bactrim experience, though it's hard to tell. She had a headache in the morning that went away. She said this evening that she was urinating up to seven times in an hour. It's home-nursing day tomorrow with blood tests, and I'm going to check with the doctor to see if we can get into the urologist sooner.
I'm working late tonight to try to get things squared away, or I'd write more...
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)
I'm working late tonight to try to get things squared away, or I'd write more...
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)
Monday, April 20, 2009
Between The Rock And A Hard Place
We had tried an experiment this weekend with Krista's medicine schedule. Normally on Saturday and Sunday she is supposed to take bactrim, which makes her feel awful, and leucovorin, which is supposed to minimize the awfulness of bactrim. The doctor had told us that they didn't have to be taken on the weekends (it was just simpler for them to tell patients to take them on weekends). The medicine pair can be taken any two days of the week. So this time, Krista thought she would save the "bad days" for Monday and Tuesday to make the weekends a little better. The weekend might have been a little better, although it took the rest of the weekend to recover from one outing; but feeling awful on Monday is not any better than feeling awful on Saturday!
Soon after she took the first dose of bactrim, she began to notice an increase in pain when urinating. That was a good reminder to make a urology appointment -- which is going to take some finagling since the recommended office is booked for the next two weeks. Her local oncologist is looking into "writing a note" to the other doctor to get her in earlier. It's a strange thing because bactrim is often used to treat bladder infections, not cause symptoms of a bladder infection. It was nice to see our friend Heather, who came over to visit and help distract Krista from her pain. The pain eventually morphed into a general bad feeling with nausea -- the typical side effects of bactrim. Krista emailed the oncologist at UCLA, who wrote back that there is an alternative drug, Mepron, that is taken daily -- but it's expensive and insurance might not cover it. We'll call tomorrow to find out.
Krista wasn't the only one feeling bad today. My mother has come down with the cold that Krista had. So far it's not too bad, she was able to take Adam to his drum lesson and make a quick trip to the grocery store, but she did need a nap and didn't look very energetic this evening. The Sutton family came to the rescue with a yummy taco salad for dinner (thank you!). Hopefully Mom will be feeling better tomorrow after a good rest.
It's a hard spot to be in like this because I need to get back into work. I went in for half the day today and discovered that there's a big release coming up Wednesday. There's quite a few items that need my attention in the office, so working from home is more difficult this week. It's pretty bad timing, but I'm praying that this will all work out somehow!
In you, O LORD, I have taken refuge;
let me never be put to shame;
deliver me in Your righteousness.
Turn Your ear to me,
come quickly to my rescue;
be my rock of refuge,
a strong fortress to save me.
Since You are my rock and my fortress,
for the sake of Your name lead and guide me.
Free me from the trap that is set for me,
for You are my refuge.
Into Your hands I commit my spirit;
redeem me, O LORD, the God of truth.
(Psalm 31:1-5)
Soon after she took the first dose of bactrim, she began to notice an increase in pain when urinating. That was a good reminder to make a urology appointment -- which is going to take some finagling since the recommended office is booked for the next two weeks. Her local oncologist is looking into "writing a note" to the other doctor to get her in earlier. It's a strange thing because bactrim is often used to treat bladder infections, not cause symptoms of a bladder infection. It was nice to see our friend Heather, who came over to visit and help distract Krista from her pain. The pain eventually morphed into a general bad feeling with nausea -- the typical side effects of bactrim. Krista emailed the oncologist at UCLA, who wrote back that there is an alternative drug, Mepron, that is taken daily -- but it's expensive and insurance might not cover it. We'll call tomorrow to find out.
Krista wasn't the only one feeling bad today. My mother has come down with the cold that Krista had. So far it's not too bad, she was able to take Adam to his drum lesson and make a quick trip to the grocery store, but she did need a nap and didn't look very energetic this evening. The Sutton family came to the rescue with a yummy taco salad for dinner (thank you!). Hopefully Mom will be feeling better tomorrow after a good rest.
It's a hard spot to be in like this because I need to get back into work. I went in for half the day today and discovered that there's a big release coming up Wednesday. There's quite a few items that need my attention in the office, so working from home is more difficult this week. It's pretty bad timing, but I'm praying that this will all work out somehow!
In you, O LORD, I have taken refuge;
let me never be put to shame;
deliver me in Your righteousness.
Turn Your ear to me,
come quickly to my rescue;
be my rock of refuge,
a strong fortress to save me.
Since You are my rock and my fortress,
for the sake of Your name lead and guide me.
Free me from the trap that is set for me,
for You are my refuge.
Into Your hands I commit my spirit;
redeem me, O LORD, the God of truth.
(Psalm 31:1-5)
Sunday, April 19, 2009
Home Improvement
Krista spent day recovering from yesterday's outing. My mother stayed with her while the boys and I went to church. It is strange to see our picture up all over the hallways at church, but it is encouraging people to donate blood and platelets locally -- and that will help somebody. Fortunately, Krista hasn't been in need of a transfusion in 11 days, but her time will come again eventually. Her platelets were up to 50,000 on Friday, making a slow and steady increase. The normal range for platelets is 150,000-400,000. Red blood has a longer lifetime, but the production factory is the last to mature -- most likely taking place once the platelet level reaches normal. Until then, she'll probably need O-negative blood transfusions every 3-4 weeks.
The Marton's had the boys over at their house this afternoon for a play date, so I was able to get to some projects around the house that I had been unable to get around to. Both of our toilets were in need of new flushing mechanisms. It was easy enough to do, but it took a couple of hours to finish and test both of them. There were also some valences that we had bought earlier at Tuesday Morning for $10 each. With my mother's help we got half of them up today. Don't they look nice? Thanks Mom for the help!
As you come to him, the living Stone — rejected by men but chosen by God and precious to him — you also, like living stones, are being built into a spiritual house to be a holy priesthood, offering spiritual sacrifices acceptable to God through Jesus Christ.
(1 Peter 2:4-5)
The Marton's had the boys over at their house this afternoon for a play date, so I was able to get to some projects around the house that I had been unable to get around to. Both of our toilets were in need of new flushing mechanisms. It was easy enough to do, but it took a couple of hours to finish and test both of them. There were also some valences that we had bought earlier at Tuesday Morning for $10 each. With my mother's help we got half of them up today. Don't they look nice? Thanks Mom for the help!
As you come to him, the living Stone — rejected by men but chosen by God and precious to him — you also, like living stones, are being built into a spiritual house to be a holy priesthood, offering spiritual sacrifices acceptable to God through Jesus Christ.
(1 Peter 2:4-5)
Saturday, April 18, 2009
Perseverance
Krista is making some really good but difficult progress. Even with a cold, she wanted to get off the couch, and go out to lunch. It was nice to be able to all go together in the old Windstar that my parents are giving to us. That is such a wonderful gift, as we had wanted to get a minivan but it was impossible with all that we've been through. Krista was able to walk from the house to the car, but after that she needed to use the wheelchair. After lunch, she said that she was still feeling good, so we took her to a store to find some curtain rods we've been needing. Apparently that was her limit, as she felt wiped out as we left. She rested and slept most of the rest of the day.
It's great to see some of that old spunk coming back in her. It is often discouraging to her how much muscle mass she lost in the hospital, but she's not going to let that stop her from trying to get it back, little by little. It's going to take a very long time to regenerate, and that the long-term trial is wearying. Please keep her in your prayers, that she might remember the big picture of her progress when she goes through setbacks that come and go.
By they way, thank you Hodson and Rodkey families for the meals yesterday and today. We have been eating very well thanks to your wonderful cooking!
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.
(James 1:2-4)
It's great to see some of that old spunk coming back in her. It is often discouraging to her how much muscle mass she lost in the hospital, but she's not going to let that stop her from trying to get it back, little by little. It's going to take a very long time to regenerate, and that the long-term trial is wearying. Please keep her in your prayers, that she might remember the big picture of her progress when she goes through setbacks that come and go.
By they way, thank you Hodson and Rodkey families for the meals yesterday and today. We have been eating very well thanks to your wonderful cooking!
Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything.
(James 1:2-4)
Friday, April 17, 2009
Less LA
Today we made our weekly travel to UCLA. The trip began with a visit to the endocrinologist who ordered some additional tests to measure her triglyceride levels and electrolyte balance. The tests were done in the oncology suite, along with the regular oncology tests. The samples were taken at 10:30 am, and they were kind enough to let Krista lay down in the transfusion suite since she had a cold. Most of the results were available by noon, but we couldn't see doctor until 5:00 pm because of a scheduling problem. That made for a long, frustrating day of waiting.
The results were worth the wait, though. Krista's blood levels, liver, and kidney are all excellent. The problem values now are potassium (high), sodium (low), triglycerides (very high), and cholesterol (very high). It's strange, but the problem readings are now starting to make sense. Cyclosporine is known to cause a direct increase in cholesterol, and indirectly increase triglycerides as well. High potassium (hyperkalemia) is known to be a side-effect of Cyclosporine as well. The low sodium is actually pseudohyponatremia, a false low due to the high levels of triglycerides.
Overall, the doctor is very pleased with Krista's progress. He reduced her daily intake of Cyclosporine again, which should help some with the side-effects, and cut the steroid dose in half again. We need to adjust her diet again, too. Our focus on reducing potassium has driven Krista to eating much more fatty foods in order to get enough protein. We're going to try moving back toward her older, healthier diet (to help with the cholesterol and triglycerides) and supplement with regular Kayexolate (to remove excess potassium).
Other good news: we only have to go to UCLA every two weeks now! And there's more; though Krista still needs to have her bladder imaged to find out what's going on with it, that can be done locally, too! Yay! Less trips to LA!
[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)
The results were worth the wait, though. Krista's blood levels, liver, and kidney are all excellent. The problem values now are potassium (high), sodium (low), triglycerides (very high), and cholesterol (very high). It's strange, but the problem readings are now starting to make sense. Cyclosporine is known to cause a direct increase in cholesterol, and indirectly increase triglycerides as well. High potassium (hyperkalemia) is known to be a side-effect of Cyclosporine as well. The low sodium is actually pseudohyponatremia, a false low due to the high levels of triglycerides.
Overall, the doctor is very pleased with Krista's progress. He reduced her daily intake of Cyclosporine again, which should help some with the side-effects, and cut the steroid dose in half again. We need to adjust her diet again, too. Our focus on reducing potassium has driven Krista to eating much more fatty foods in order to get enough protein. We're going to try moving back toward her older, healthier diet (to help with the cholesterol and triglycerides) and supplement with regular Kayexolate (to remove excess potassium).
Other good news: we only have to go to UCLA every two weeks now! And there's more; though Krista still needs to have her bladder imaged to find out what's going on with it, that can be done locally, too! Yay! Less trips to LA!
[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, April 16, 2009
Stinky
I woke up this morning to someone knocking on our front door. It was our 7-year old neighbor, Sean who let me know that there was an injured 
skunk stuck under the fence between our yards. It was stuck under a different fence in their yard, and Ray managed to dislodge it, but it got stuck trying to escape under the other fence. I called the County Animal Shelter, but they weren't open yet. The message said that if there was an injured animal, call 911. 911 told me to call the County Animal Shelter. I explained to them the chicken-or-the-egg situation and finally got them to take my address. They did manage to send out a guy, and he have to work hard to get that thing out. 
Something was wrong with it's backside, possibly a broken back, because it was unable to move it's tail. The shelter guy dug the dirt out around it, but it was still unable to free itself. He eventually got a towel out and wrapped it around the skunk and somehow pulled it out, into a special crate for critters. 
As he took it away, he told us that they usually try to release captured skunks back into the wild in unpopulated areas -- but if they're badly injured they might have to put him down.
In other stinky news, Krista's caught a cold that has added a new level of discomfort. It was good that Catherine Grant was able to visit today, because that cheered her up. My mother also made her famous moussaka for lunch, which Krista enjoyed even though it is a high potassium food. At last measure, her potassium was normal and Krista wanted to test to see how much food really would affect the labs tomorrow. I put in a few hours at work this afternoon, and was so thankful to the Suttons for bringing us a tasty chicken parmesan dinner because it's been a long day for all of us.
I wrote yesterday that Krista's bladder situation was under control, but Krista corrected me. The pain has been better, but her frequency is still quite high and the amount she gets out each time has been decreasing. If this is not a bladder infection, then it could be a hemorrhagic cystitis. That is something that can happen in female cancer patients, where a bladder hemorrhage makes blood clots that won't pass through the urethra. This can result in blockage. We're going down to UCLA tomorrow, and hopefully they can get us more info about it. Just in case, we have scheduled another appointment on Tuesday with the urologist she saw down there previously.
Have mercy on me, O God, have mercy on me,
for in You my soul takes refuge.
I will take refuge in the shadow of Your wings
until the disaster has passed.
I cry out to God Most High,
to God, who fulfills His purpose for me.
(Psalm 57:1-2)
skunk stuck under the fence between our yards. It was stuck under a different fence in their yard, and Ray managed to dislodge it, but it got stuck trying to escape under the other fence. I called the County Animal Shelter, but they weren't open yet. The message said that if there was an injured animal, call 911. 911 told me to call the County Animal Shelter. I explained to them the chicken-or-the-egg situation and finally got them to take my address. They did manage to send out a guy, and he have to work hard to get that thing out. 
Something was wrong with it's backside, possibly a broken back, because it was unable to move it's tail. The shelter guy dug the dirt out around it, but it was still unable to free itself. He eventually got a towel out and wrapped it around the skunk and somehow pulled it out, into a special crate for critters. 
As he took it away, he told us that they usually try to release captured skunks back into the wild in unpopulated areas -- but if they're badly injured they might have to put him down. In other stinky news, Krista's caught a cold that has added a new level of discomfort. It was good that Catherine Grant was able to visit today, because that cheered her up. My mother also made her famous moussaka for lunch, which Krista enjoyed even though it is a high potassium food. At last measure, her potassium was normal and Krista wanted to test to see how much food really would affect the labs tomorrow. I put in a few hours at work this afternoon, and was so thankful to the Suttons for bringing us a tasty chicken parmesan dinner because it's been a long day for all of us.
I wrote yesterday that Krista's bladder situation was under control, but Krista corrected me. The pain has been better, but her frequency is still quite high and the amount she gets out each time has been decreasing. If this is not a bladder infection, then it could be a hemorrhagic cystitis. That is something that can happen in female cancer patients, where a bladder hemorrhage makes blood clots that won't pass through the urethra. This can result in blockage. We're going down to UCLA tomorrow, and hopefully they can get us more info about it. Just in case, we have scheduled another appointment on Tuesday with the urologist she saw down there previously.
Have mercy on me, O God, have mercy on me,
for in You my soul takes refuge.
I will take refuge in the shadow of Your wings
until the disaster has passed.
I cry out to God Most High,
to God, who fulfills His purpose for me.
(Psalm 57:1-2)
Wednesday, April 15, 2009
Lifted Up
Krista's bladder infection is now under control with the antibiotic. There hasn't been any more pain, and the frequency of urination has decreased. That's good news because there were some other possibilities for her symptoms that would have been much more complicated to deal with.
The labs results from last week's endocrinologist visit are finally complete. They show that Krista's adrenals are properly generating aldesterone when stimulated. The doctor started looking over Krista's other labs and found some things that need to be addressed. Her thyroid level is a little high, which accounts for some of the anxiety and "sped-up" feelings she's been having. There's also some glucose in her urine, that may be a result of some minor diabetic-like effects from the Cyclosporine she takes to prevent Graft-Versus-Host Disease. The labs hadn't measured her triglyceride level, which might be important because if it's elevated it can cause a false low-sodium reading (an effect of hypertriglyceridemia). Krista's going to need to do some additional lab work on Friday when we go back down to UCLA.
Krista and I were really blessed to have some visitors come over today. Bob brought us chicken soup for dinner which was really nice. This was the first time we had met him, though Krista knew his wife Michelle from homeschool events. We had a great time getting to know him. Also, our Australian friend Maxine, whose family is living a couple of blocks from us for a short time, had her friend Christine visiting from Australia. Christine and Krista have become friends over Facebook, so it was nice to get to meet her in person. Alyssa also picked up our kids to take them to Robin Hood, as performed by the local Artios drama club. Yesterday, we were also blessed to have Willow bring us a dinner of chicken and mini-raviolis. Thank you all for your loving comfort and support!
It's very encouraging for Krista to get visitors, as it helps distract her from the pains she goes through. She has had a hard time explaining the pains, but today she came up with a pretty good description: all-over pressure from the internal organs out. When it happens, there's no way to get comfortable and moaning is the only way to deal with it. These kinds of pains seem to be normal for transplant patients, as Krista was reminded in a very encouraging phone call with a 20-year survivor of a bone marrow transplant who not only related with the symptoms Krista is going through, but said that Krista is doing amazingly well. Kenon was in the hospital for the first 100 days, and it took her 9 months before she had a glimmer of her old self.
Why are you downcast, O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise him,
my Savior and my God.
(Psalm 42:11)
The labs results from last week's endocrinologist visit are finally complete. They show that Krista's adrenals are properly generating aldesterone when stimulated. The doctor started looking over Krista's other labs and found some things that need to be addressed. Her thyroid level is a little high, which accounts for some of the anxiety and "sped-up" feelings she's been having. There's also some glucose in her urine, that may be a result of some minor diabetic-like effects from the Cyclosporine she takes to prevent Graft-Versus-Host Disease. The labs hadn't measured her triglyceride level, which might be important because if it's elevated it can cause a false low-sodium reading (an effect of hypertriglyceridemia). Krista's going to need to do some additional lab work on Friday when we go back down to UCLA.
Krista and I were really blessed to have some visitors come over today. Bob brought us chicken soup for dinner which was really nice. This was the first time we had met him, though Krista knew his wife Michelle from homeschool events. We had a great time getting to know him. Also, our Australian friend Maxine, whose family is living a couple of blocks from us for a short time, had her friend Christine visiting from Australia. Christine and Krista have become friends over Facebook, so it was nice to get to meet her in person. Alyssa also picked up our kids to take them to Robin Hood, as performed by the local Artios drama club. Yesterday, we were also blessed to have Willow bring us a dinner of chicken and mini-raviolis. Thank you all for your loving comfort and support!
It's very encouraging for Krista to get visitors, as it helps distract her from the pains she goes through. She has had a hard time explaining the pains, but today she came up with a pretty good description: all-over pressure from the internal organs out. When it happens, there's no way to get comfortable and moaning is the only way to deal with it. These kinds of pains seem to be normal for transplant patients, as Krista was reminded in a very encouraging phone call with a 20-year survivor of a bone marrow transplant who not only related with the symptoms Krista is going through, but said that Krista is doing amazingly well. Kenon was in the hospital for the first 100 days, and it took her 9 months before she had a glimmer of her old self.
Why are you downcast, O my soul?
Why so disturbed within me?
Put your hope in God,
for I will yet praise him,
my Savior and my God.
(Psalm 42:11)
Monday, April 13, 2009
Leaven
My mother came up from Carlsbad this afternoon. We had been having really clear traffic going back and forth to UCLA, so we were surprised to hear that it took her 5 hours to get here! Dad's been recovering well from his surgery, so she felt like it was OK to leave him alone for a while. She was pretty tired by the time she got here, so we were all grateful that Mia McElwee had brought us a prepared meal.
Krista and I had a much better day today. Krista even broke out her old Fibromyalgia exercise tapes to do a little low-impact stretching. Her intestinal problems faded away, but the frequent urination continued. Throughout the day, urination became more painful and Krista became concerned that she had a bladder infection. The doctor had her take a sample to test for bacteria, but gave her an antibiotic just in case.
Infections are a big deal when you're immunosuppressed because they can get out of control quickly. It's the same principle that we learned about last week in the Seder dinner. Before the dinner, the mother and kids are supposed to go through the house and remove every trace of leaven, but they intentionally leave one piece behind. At the beginning of the Seder, the father inspects the house and isn't done until he finds the one piece left behind. The act is supposed to remind the family of the importance of keeping one's life and doctrine pure before God, because the scriptures frequently use yeast as a symbol of sin. Just like the yeast bacteria multiplies and spreads through dough, so also sin multiplies and spreads in our lives and in our communities when left unchecked. And that's why Jesus came -- to break the cycle of sin and change our nature from one that multiplies sinful thoughts and actions to one that multiplies righteousness. That is what Jesus was communicating in His shortest of parables:
He told them still another parable: "The kingdom of heaven is like yeast that a woman took and mixed into a large amount of flour until it worked all through the dough."
(Matthew 13:33)
Krista and I had a much better day today. Krista even broke out her old Fibromyalgia exercise tapes to do a little low-impact stretching. Her intestinal problems faded away, but the frequent urination continued. Throughout the day, urination became more painful and Krista became concerned that she had a bladder infection. The doctor had her take a sample to test for bacteria, but gave her an antibiotic just in case.
Infections are a big deal when you're immunosuppressed because they can get out of control quickly. It's the same principle that we learned about last week in the Seder dinner. Before the dinner, the mother and kids are supposed to go through the house and remove every trace of leaven, but they intentionally leave one piece behind. At the beginning of the Seder, the father inspects the house and isn't done until he finds the one piece left behind. The act is supposed to remind the family of the importance of keeping one's life and doctrine pure before God, because the scriptures frequently use yeast as a symbol of sin. Just like the yeast bacteria multiplies and spreads through dough, so also sin multiplies and spreads in our lives and in our communities when left unchecked. And that's why Jesus came -- to break the cycle of sin and change our nature from one that multiplies sinful thoughts and actions to one that multiplies righteousness. That is what Jesus was communicating in His shortest of parables:
He told them still another parable: "The kingdom of heaven is like yeast that a woman took and mixed into a large amount of flour until it worked all through the dough."
(Matthew 13:33)
Sunday, April 12, 2009
In Spirit, Not In Person
Krista and I were both feeling awful today, though in completely different ways. Krista was having intestinal problems again. There may be some more to it than that, though, because even after the laxative started working she was still feeling bad. She said tonight before going to bed that she feels like she might be dehydrated, even though she has been drinking a good amount. The doctor said that cutting back on the steroids can cause feelings of weakness. Perhaps that is what is going on. Her temperature and blood pressure are fine, but if she's continuing to feel bad in the morning I'll call UCLA to see if there's anything extra we should do.
My awful feeling was either from exhaustion or fighting off something. I slept most of the day, and felt a lot better by the late afternoon. My mother is coming up tomorrow and that should help out with much of my load. Plus, Cheryl has organized it so that people are starting to bring us some meals tomorrow as well. I've been trying to keep up with it, but there is just so much to do that I am not able to do everything. Krista wants to start helping me out, because she sees how much there is to do, but she's been having a rough weekend. We expect weekends to be rough on her, though, because of this antibiotic that she takes only on Saturday and Sunday that is notorious for making patients feel awful.
We missed out on the Easter service, but we did get to see last week's message rebroadcast on the local cable channel. The boys got excited when they saw the Easter banner over the stage. They said, "Cory made that!" Apparently they really enjoyed watching Cory Steffen making art on the computer -- and he did an incredible job on it too! So, though we weren't there in person, we were in spirit.
On the first day of the week, very early in the morning, the women took the spices they had prepared and went to the tomb. They found the stone rolled away from the tomb, but when they entered, they did not find the body of the Lord Jesus. While they were wondering about this, suddenly two men in clothes that gleamed like lightning stood beside them. In their fright the women bowed down with their faces to the ground, but the men said to them, "Why do you look for the living among the dead? He is not here; he has risen! Remember how he told you, while he was still with you in Galilee: 'The Son of Man must be delivered into the hands of sinful men, be crucified and on the third day be raised again.' " Then they remembered his words.
(Luke 24:1-8)
My awful feeling was either from exhaustion or fighting off something. I slept most of the day, and felt a lot better by the late afternoon. My mother is coming up tomorrow and that should help out with much of my load. Plus, Cheryl has organized it so that people are starting to bring us some meals tomorrow as well. I've been trying to keep up with it, but there is just so much to do that I am not able to do everything. Krista wants to start helping me out, because she sees how much there is to do, but she's been having a rough weekend. We expect weekends to be rough on her, though, because of this antibiotic that she takes only on Saturday and Sunday that is notorious for making patients feel awful.
We missed out on the Easter service, but we did get to see last week's message rebroadcast on the local cable channel. The boys got excited when they saw the Easter banner over the stage. They said, "Cory made that!" Apparently they really enjoyed watching Cory Steffen making art on the computer -- and he did an incredible job on it too! So, though we weren't there in person, we were in spirit.
On the first day of the week, very early in the morning, the women took the spices they had prepared and went to the tomb. They found the stone rolled away from the tomb, but when they entered, they did not find the body of the Lord Jesus. While they were wondering about this, suddenly two men in clothes that gleamed like lightning stood beside them. In their fright the women bowed down with their faces to the ground, but the men said to them, "Why do you look for the living among the dead? He is not here; he has risen! Remember how he told you, while he was still with you in Galilee: 'The Son of Man must be delivered into the hands of sinful men, be crucified and on the third day be raised again.' " Then they remembered his words.
(Luke 24:1-8)
Sniffles And More
Trevor came down with sniffles yesterday, and they've continued into today. He's not too bad, but we're trying to do everything we can to keep him from spreading it. He was pretty out of it, and took a bad spill on his face when he was playing around after lunch. He's got a fat lip on one side, but other than that he's doing fine. He even insisted on dying eggs after dinner.I was feeling like I was fighting something off, though it's mainly just being achy. I could have overdone it working around the house -- or maybe I'm just getting old.
Krista had a really hard day, too. She mainly had swelling and aches. No fever, and her blood pressure has been fine; just lots of moaning. It's really a bummer because she was looking forward to going to Easter service. We were surprised the other day when we visited the oncologist that he recommended going to church as long as she didn't sit near anyone coughing terribly. That got her hopes up, but now she's feeling like she might not make it.
O LORD, do not forsake me;
be not far from me, O my God.
Come quickly to help me,
O Lord my Savior.
(Psalm 38:21-22)
Friday, April 10, 2009
Good Friday
We had to get an early start for today's trip to UCLA. We were dropping the kids off at the Madagian's house, then driving Becky down to LAX, and then back to UCLA for our 10:40 am appointment. It normally takes about an hour and a half to get from here to UCLA, but today it was supposed to rain so we figured that we would need double that to deal with the traffic problems that were bound to arise. I was amazed that we were on the road by 7:15 am, and that there was almost no rain or traffic all the way there. Becky was over three hours early for her past-noon flight. (Good thing she brought a book!) We quickly said goodbye and headed back to the freeway expecting to be stuck in the heavy traffic we saw on the other side on the way down. In our worry we prayed, and God must have cleared the way for us because it flowed very well and we made it to Westwood about an hour and a half early. That was amazingly fast travel for a day that was supposed to be slow as molassas.
Krista was very hopeful that our meeting with the endocrinologist was going to confirm that she had adrenal insufficincy and get her on the right medicines to get her back to eating potassium-rich foods. This was not the case at all. The ACTH test showed that her cortisone level went up when the adrenals were stimulated, just as would happen with a normal person. So why has Krista's potassium been high and her sodium low? They can't rule out a problem with her adrenals not creating aldesterone until the lab results come back Tuesday or Wednesday. But another, more simple, reason is looking more likely. The immunosuppressent, cyclosporine, that Krista takes daily to prevent Graft-Versus-Host Disease (GVHD) can have a side-effect that raises potassium and lowers sodium. Recognizing this possibility, and taking note that that her GVHD rash didn't return with the reduced steroid this week, her oncologist reduced her dose of both cyclosporine and Medrol. Krista still is supposed to watch her potassium intake (which was very disappointing), but occasional excesses should be OK as long as we treat her with Kayexolate if she starts to feel that high-potassium weakness again.
While we were down there we ran into a couple of familiar faces. Elizabeth from Santa Barbara was down for her initial meet-and-greet, and it was nice to get to meet her husband. I can't remember his name now, because we were quite distracted at the time, having just heard the news about her adrenals when we saw them. Later we saw Tim Potter, one of Krista's hospital neighbors who got a stem-cell transplant around the same time as she did. I don't remember if we mentioned him before, but Krista was fascinated that he was playing a didgeridoo in the hospital. He is blogging his own stem-cell adventure at http://unidude.blogspot.com/, which includes his older brother donating his bone marrow for the transplant! They are a really neat family and we look forward to getting to know them better.
Since it is Good Friday, and it was a very good Friday, I'll close with an awesome reminder of what Jesus did for us on the cross:
He was despised and rejected by men,
a man of sorrows, and familiar with suffering.
Like one from whom men hide their faces
he was despised, and we esteemed him not.
Surely he took up our infirmities
and carried our sorrows,
yet we considered him stricken by God,
smitten by him, and afflicted.
But he was pierced for our transgressions,
he was crushed for our iniquities;
the punishment that brought us peace was upon him,
and by his wounds we are healed.
We all, like sheep, have gone astray,
each of us has turned to his own way;
and the LORD has laid on him
the iniquity of us all.
(Isaiah 53:3-6)
Krista was very hopeful that our meeting with the endocrinologist was going to confirm that she had adrenal insufficincy and get her on the right medicines to get her back to eating potassium-rich foods. This was not the case at all. The ACTH test showed that her cortisone level went up when the adrenals were stimulated, just as would happen with a normal person. So why has Krista's potassium been high and her sodium low? They can't rule out a problem with her adrenals not creating aldesterone until the lab results come back Tuesday or Wednesday. But another, more simple, reason is looking more likely. The immunosuppressent, cyclosporine, that Krista takes daily to prevent Graft-Versus-Host Disease (GVHD) can have a side-effect that raises potassium and lowers sodium. Recognizing this possibility, and taking note that that her GVHD rash didn't return with the reduced steroid this week, her oncologist reduced her dose of both cyclosporine and Medrol. Krista still is supposed to watch her potassium intake (which was very disappointing), but occasional excesses should be OK as long as we treat her with Kayexolate if she starts to feel that high-potassium weakness again.
While we were down there we ran into a couple of familiar faces. Elizabeth from Santa Barbara was down for her initial meet-and-greet, and it was nice to get to meet her husband. I can't remember his name now, because we were quite distracted at the time, having just heard the news about her adrenals when we saw them. Later we saw Tim Potter, one of Krista's hospital neighbors who got a stem-cell transplant around the same time as she did. I don't remember if we mentioned him before, but Krista was fascinated that he was playing a didgeridoo in the hospital. He is blogging his own stem-cell adventure at http://unidude.blogspot.com/, which includes his older brother donating his bone marrow for the transplant! They are a really neat family and we look forward to getting to know them better.
Since it is Good Friday, and it was a very good Friday, I'll close with an awesome reminder of what Jesus did for us on the cross:
He was despised and rejected by men,
a man of sorrows, and familiar with suffering.
Like one from whom men hide their faces
he was despised, and we esteemed him not.
Surely he took up our infirmities
and carried our sorrows,
yet we considered him stricken by God,
smitten by him, and afflicted.
But he was pierced for our transgressions,
he was crushed for our iniquities;
the punishment that brought us peace was upon him,
and by his wounds we are healed.
We all, like sheep, have gone astray,
each of us has turned to his own way;
and the LORD has laid on him
the iniquity of us all.
(Isaiah 53:3-6)
Thursday, April 9, 2009
Healing Garden
It was a high potassium day today. Krista dealt with a lot of body and stomach pains, weird tinglings, weakness. The tip of her tongue is still recovering from the mucositis/breathing tube damage when she was in the ICU more than a month ago. She used to describe the feeling as an annoying numbness, but lately it has been feeling like it was on fire. At the worst of it, she turned to me and said, "this must be what it feels like in Hell". I think she was referring to Luke 16:19-31 where the rich man asks Lazarus to dip the tip of his finger in water to cool his tongue. She really felt disappointed with how bad she felt today, especially after feeling so good last night. She feels like people might think that if she just ate a certain way, or exercised more strenuously, or do something to improve her situation, that she would make herself heal faster. We wish it were that easy. It's just going to take time for her body to heal itself and it's taking a great deal of patience to get through the long haul of recovery.
We really appreciate your continued perseverance with us in prayer as we continue our struggles. Krista wanted me to mention that she is always surprised that people are still reading the blog. We both really appreciate your continued interest in the progress. God has blessed us in so many ways through this, and we hope that it continues to be a blessing to you as well.
Today was also our last full day with Becky. She has been so helpful around the house, but today she got really out-did herself. She transformed our ugly entrance planter into a what we are calling a healing garden. The entrance-way planter used to be really awful; it was pretty much all dirt that seems to attract all the neighborhood animals like a giant litterbox. Becky treated the soil with compost, planted some beautiful plants that will eventually fill in the area, covered the dirt with landscape tarp to keep the weeds out, and put white marble chips on top to keep moisture in. 
I don't know if you can tell from the tiny pictures, but it looks really nice, and it's also sort of symbolic of Krista's healing process. 
It may take a long time for her to heal, just like it's going to take a long time for these plants to grow and fill in. Thanks Becky! It's been great having you here!
May God be gracious to us and bless us
and make his face shine upon us,
that your ways may be known on earth,
your salvation among all nations.
May the peoples praise you, O God;
may all the peoples praise you.
May the nations be glad and sing for joy,
for you rule the peoples justly
and guide the nations of the earth.
May the peoples praise you, O God;
may all the peoples praise you.
Then the land will yield its harvest,
and God, our God, will bless us.
God will bless us,
and all the ends of the earth will fear him.
(Psalm 67)
We really appreciate your continued perseverance with us in prayer as we continue our struggles. Krista wanted me to mention that she is always surprised that people are still reading the blog. We both really appreciate your continued interest in the progress. God has blessed us in so many ways through this, and we hope that it continues to be a blessing to you as well.
Today was also our last full day with Becky. She has been so helpful around the house, but today she got really out-did herself. She transformed our ugly entrance planter into a what we are calling a healing garden. The entrance-way planter used to be really awful; it was pretty much all dirt that seems to attract all the neighborhood animals like a giant litterbox. Becky treated the soil with compost, planted some beautiful plants that will eventually fill in the area, covered the dirt with landscape tarp to keep the weeds out, and put white marble chips on top to keep moisture in. 
I don't know if you can tell from the tiny pictures, but it looks really nice, and it's also sort of symbolic of Krista's healing process. 
It may take a long time for her to heal, just like it's going to take a long time for these plants to grow and fill in. Thanks Becky! It's been great having you here!May God be gracious to us and bless us
and make his face shine upon us,
that your ways may be known on earth,
your salvation among all nations.
May the peoples praise you, O God;
may all the peoples praise you.
May the nations be glad and sing for joy,
for you rule the peoples justly
and guide the nations of the earth.
May the peoples praise you, O God;
may all the peoples praise you.
Then the land will yield its harvest,
and God, our God, will bless us.
God will bless us,
and all the ends of the earth will fear him.
(Psalm 67)
Wednesday, April 8, 2009
Nothing But The Blood
The red blood transfusion went well today, though it took most of the day to do. They actually gave her 2 bags, which should hold her for a good long time. They started her off in the transfusion chairs, which aren't nearly as comfortable as UCLA's transfusion chairs for some reason. She was shifting around quite a bit after sitting there for an hour or so. Since she was going to be there for a long time, Krista asked the nurses if there was a bed available. Fortunately, there was one. A nurse told us that it unusual to have a free bed because they had been so booked that just days ago people were standing up waiting to get outpatient chemotherapy.
We got home just in time to go to a Passover Seder dinner for my boys' Hebrew class. Krista stayed home with Becky because evenings are usually lower-energy times. As we partook of the dinner, Dyan, our boy's Hebrew teacher, explained to us the significance of the Seder dinner as it would have been practiced in the days of Jesus' earth-bound ministry. It is amazing how the components all speak of Jesus and His purpose -- yet the practice is from many centuries before His birth. I think the boys will never forget eating the bitter herbs that remind us of the bitterness of the Israelite's slavery in Egypt, and of the bitterness of our slavery to sin outside of Christ. I thought the breaking of the middle piece of matzo bread, which then gets hidden and later redeemed, was an amazing picture of the death, burial, and resurrection of Jesus. No wonder He referred to that piece saying "this is my body" (Matthew 26:26 and Mark 14:22). What a great way to help the kids get a fuller understanding of what Easter is really all about: Jesus, "the Lamb of God who takes away the sin of the world." (John 1:29b)
When we got back, Krista looked tired but excited. While we were gone, she had done an amazing amount of activity: walking, heating up dinner, and bathing -- and all of this she did by herself... at night! That is really some amazing progress. She's likely to be sore tomorrow, but we don't have anything scheduled, anyway, so it's a good time for it.
Never again will they hunger;
never again will they thirst.
The sun will not beat upon them,
nor any scorching heat.
For the Lamb at the center of the throne will be their shepherd;
He will lead them to springs of living water.
And God will wipe away every tear from their eyes.
(Revelation 7:16-17)
We got home just in time to go to a Passover Seder dinner for my boys' Hebrew class. Krista stayed home with Becky because evenings are usually lower-energy times. As we partook of the dinner, Dyan, our boy's Hebrew teacher, explained to us the significance of the Seder dinner as it would have been practiced in the days of Jesus' earth-bound ministry. It is amazing how the components all speak of Jesus and His purpose -- yet the practice is from many centuries before His birth. I think the boys will never forget eating the bitter herbs that remind us of the bitterness of the Israelite's slavery in Egypt, and of the bitterness of our slavery to sin outside of Christ. I thought the breaking of the middle piece of matzo bread, which then gets hidden and later redeemed, was an amazing picture of the death, burial, and resurrection of Jesus. No wonder He referred to that piece saying "this is my body" (Matthew 26:26 and Mark 14:22). What a great way to help the kids get a fuller understanding of what Easter is really all about: Jesus, "the Lamb of God who takes away the sin of the world." (John 1:29b)
When we got back, Krista looked tired but excited. While we were gone, she had done an amazing amount of activity: walking, heating up dinner, and bathing -- and all of this she did by herself... at night! That is really some amazing progress. She's likely to be sore tomorrow, but we don't have anything scheduled, anyway, so it's a good time for it.
Never again will they hunger;
never again will they thirst.
The sun will not beat upon them,
nor any scorching heat.
For the Lamb at the center of the throne will be their shepherd;
He will lead them to springs of living water.
And God will wipe away every tear from their eyes.
(Revelation 7:16-17)
Tuesday, April 7, 2009
Some Relief
It was IVIG day once again. Krista's blood pressure was low enough today to not need to take her extra blood pressure reducers. Lower blood pressure is consistent with adrenal insufficiency. About an hour into the IVIG transfusion, Krista began to feel extremely weak and light-headed. We were getting nervous about it when we realized that last week she did the same thing in reaction to the benedryl. Once she sleeps off the initial reaction, things seem to go better with her.
I called in to the Santa Barbara oncologist's office to find out the results of the labs that the home-care nurse took before starting the transfusion. The assistant said that everything was good and proceeded to fax me a copy of the labs. We always like to look the labs over to have a feel for where she's at, and this time I saw that her red blood was 8.4. At UCLA, anything below 9.0 requires a blood transfusion, so I called the local office back and asked why they said it was all good. It's just the different offices have different standards, but the local doctor is OK playing by UCLA's rules if that's how we want it. Krista has been borderline for a couple of weeks now, so I think it's about time to bump it up. We are scheduled for an early morning transfusion tomorrow.
The sores in Krista's mouth got really painful today. We wrote an email to the UCLA oncologist yesterday with a question about it, and he got back today saying that he thought the sores might be a virus instead of mucositis. When Krista heard that, she remembered that she had sores like this during chemo the first time and that they had given her Valtrex which helped it. We emailed UCLA that information and ended up getting a prescription phoned into our local pharmacy. The medicine seems to be working, as Krista first felt the sores getting better and then began to have more energy in the evening.
To the LORD I cry aloud,
and He answers me from His holy hill.
I lie down and sleep;
I wake again, because the LORD sustains me.
(Psalm 3:4-5)
I called in to the Santa Barbara oncologist's office to find out the results of the labs that the home-care nurse took before starting the transfusion. The assistant said that everything was good and proceeded to fax me a copy of the labs. We always like to look the labs over to have a feel for where she's at, and this time I saw that her red blood was 8.4. At UCLA, anything below 9.0 requires a blood transfusion, so I called the local office back and asked why they said it was all good. It's just the different offices have different standards, but the local doctor is OK playing by UCLA's rules if that's how we want it. Krista has been borderline for a couple of weeks now, so I think it's about time to bump it up. We are scheduled for an early morning transfusion tomorrow.
The sores in Krista's mouth got really painful today. We wrote an email to the UCLA oncologist yesterday with a question about it, and he got back today saying that he thought the sores might be a virus instead of mucositis. When Krista heard that, she remembered that she had sores like this during chemo the first time and that they had given her Valtrex which helped it. We emailed UCLA that information and ended up getting a prescription phoned into our local pharmacy. The medicine seems to be working, as Krista first felt the sores getting better and then began to have more energy in the evening.
To the LORD I cry aloud,
and He answers me from His holy hill.
I lie down and sleep;
I wake again, because the LORD sustains me.
(Psalm 3:4-5)
Monday, April 6, 2009
Insufficient
We got off to a late start but thankfully traffic was clear and we made it down to our appointment at UCLA ten minutes early. This was our first visit with the endocrinologist, and we were very pleased to find that the doctor was extremely knowledgeable and had a good bedside manner. That always helps.
Still the news was not easy to take. It is likely that Krista has adrenal insufficiency. That means that her adrenal glands aren't doing their job. This could be a problem with her hypothalamus or pituitary gland not creating the proper chemical signals to make the adrenal glands do their thing (secondary adrenal insufficiency). It's more likely, however, to be primary adrenal insufficiency which means that the adrenals are receiving the signals but are not responding. The endocrinologist said the latter would be more consistent with the high potassium and low sodium levels. (They usually see both low with secondary adrenal insufficiency.) The doctor gave her an ACTH stimulation test to make the diagnosis certain. The test is done by first testing her baseline blood levels, then injecting her with something that stimulates the adrenal-signal generation, and then testing her blood levels at 30 and 60 minutes after the injection. If the signals never get generated, that will show up on the tests. If the signals are generated but the adrenals don't respond, that will show up differently on the test. We have a follow-up appointment on Friday when the results should be available.
If the doctor's suspicions are correct, Krista's adrenal glands may have become over-stressed as a result of her previous liver-failure. The adrenal glands sit on top of the kidneys, and her kidneys were previously shut down as a result of the liver-failure. It's not too hard to imagine that the adrenals would be affected as well. If the adrenals are no longer functional, Krista will probably need to take a small dose of Medrol to replace the cortisone the adrenals produce, and Fludrocortisone to keep a balance between her sodium and potassium levels. She would need to take these two for the rest of her life. We have some concerns about long-term use of steroids, though. Krista had taken prednisone to reduce inflammation due to a lupus flare-up. It worked for a while, but after a couple of weeks the prednisone actually started causing inflammation. The doctor said that the doses are very gentle and only meant to replenish the natural levels of the missing hormones; other side-effects should be minimal.
As I mentioned earlier, the news of this was very difficult for Krista. She broke down in tears on hearing that her adrenals might be broken permanently. It helped to know that the medicines can manage the effects. But there was more to be upset about tonight... the mucositis that came back a couple of days ago seems to be spreading. There's a new sore right in the middle of her throat where she swallows. Aside from making eating difficult, it's also causing her to eat less. She's already been losing weight (also consistent with adrenal insufficiency) though she had been eating all the time because the Medrol makes her feel starving. This is all just the craziest set of contradictions, and it's very discouraging to Krista who has been trying so hard to do things right.
Out of the depths I cry to you, O LORD;
O Lord, hear my voice.
Let your ears be attentive
to my cry for mercy.
If you, O LORD, kept a record of sins,
O Lord, who could stand?
But with you there is forgiveness;
therefore you are feared.
I wait for the LORD, my soul waits,
and in his word I put my hope.
My soul waits for the Lord
more than watchmen wait for the morning,
more than watchmen wait for the morning.
O Israel, put your hope in the LORD,
for with the LORD is unfailing love
and with him is full redemption.
He himself will redeem Israel
from all their sins.
(Psalm 130)
Still the news was not easy to take. It is likely that Krista has adrenal insufficiency. That means that her adrenal glands aren't doing their job. This could be a problem with her hypothalamus or pituitary gland not creating the proper chemical signals to make the adrenal glands do their thing (secondary adrenal insufficiency). It's more likely, however, to be primary adrenal insufficiency which means that the adrenals are receiving the signals but are not responding. The endocrinologist said the latter would be more consistent with the high potassium and low sodium levels. (They usually see both low with secondary adrenal insufficiency.) The doctor gave her an ACTH stimulation test to make the diagnosis certain. The test is done by first testing her baseline blood levels, then injecting her with something that stimulates the adrenal-signal generation, and then testing her blood levels at 30 and 60 minutes after the injection. If the signals never get generated, that will show up on the tests. If the signals are generated but the adrenals don't respond, that will show up differently on the test. We have a follow-up appointment on Friday when the results should be available.
If the doctor's suspicions are correct, Krista's adrenal glands may have become over-stressed as a result of her previous liver-failure. The adrenal glands sit on top of the kidneys, and her kidneys were previously shut down as a result of the liver-failure. It's not too hard to imagine that the adrenals would be affected as well. If the adrenals are no longer functional, Krista will probably need to take a small dose of Medrol to replace the cortisone the adrenals produce, and Fludrocortisone to keep a balance between her sodium and potassium levels. She would need to take these two for the rest of her life. We have some concerns about long-term use of steroids, though. Krista had taken prednisone to reduce inflammation due to a lupus flare-up. It worked for a while, but after a couple of weeks the prednisone actually started causing inflammation. The doctor said that the doses are very gentle and only meant to replenish the natural levels of the missing hormones; other side-effects should be minimal.
As I mentioned earlier, the news of this was very difficult for Krista. She broke down in tears on hearing that her adrenals might be broken permanently. It helped to know that the medicines can manage the effects. But there was more to be upset about tonight... the mucositis that came back a couple of days ago seems to be spreading. There's a new sore right in the middle of her throat where she swallows. Aside from making eating difficult, it's also causing her to eat less. She's already been losing weight (also consistent with adrenal insufficiency) though she had been eating all the time because the Medrol makes her feel starving. This is all just the craziest set of contradictions, and it's very discouraging to Krista who has been trying so hard to do things right.
Out of the depths I cry to you, O LORD;
O Lord, hear my voice.
Let your ears be attentive
to my cry for mercy.
If you, O LORD, kept a record of sins,
O Lord, who could stand?
But with you there is forgiveness;
therefore you are feared.
I wait for the LORD, my soul waits,
and in his word I put my hope.
My soul waits for the Lord
more than watchmen wait for the morning,
more than watchmen wait for the morning.
O Israel, put your hope in the LORD,
for with the LORD is unfailing love
and with him is full redemption.
He himself will redeem Israel
from all their sins.
(Psalm 130)
Sunday, April 5, 2009
Quick Update
Kayexolate has helped Krista's weakness, at least temporarily. She was up and walking around this morning. She even got in and out of the bath by herself again, though she noticed this time that if she didn't do it exactly right getting out was impossible.
Ricky's sermon this morning was on handling the pressures of life -- a very relevant topic to me. It was funny because I had just blogged yesterday about how I felt like I was going to need help -- and one of the points in the message is that sometimes you just have to ask for help. So that's what I did today. I know that feeding my family is going to be one of the more difficult items for me to manage, and many people have expressed interest in bringing us meals. Cheryl Giordani had organized meals for us while Krista was in the first time, and she had said to let her know when we were ready to start up again. So today I let her know that I was ready after my sister leaves on Friday. She sent me a message earlier tonight saying that nearly 20 people are already signed up! That is just so amazing. I don't want to publish her phone number or email here, but if you're local and interested in helping out let me know and I'll forward you the contact info.
We go to UCLA bright and early tomorrow, so I'm going to cut this short. Please pray that the endocrinologist will have wisdom and insight into this strange elevated potassium problem.
[Solomon writing] My son, if you accept my words
and store up my commands within you,
turning your ear to wisdom
and applying your heart to understanding,
and if you call out for insight
and cry aloud for understanding,
and if you look for it as for silver
and search for it as for hidden treasure,
then you will understand the fear of the LORD
and find the knowledge of God.
For the LORD gives wisdom,
and from his mouth come knowledge and understanding.
(Proverbs 2:1-6)
Ricky's sermon this morning was on handling the pressures of life -- a very relevant topic to me. It was funny because I had just blogged yesterday about how I felt like I was going to need help -- and one of the points in the message is that sometimes you just have to ask for help. So that's what I did today. I know that feeding my family is going to be one of the more difficult items for me to manage, and many people have expressed interest in bringing us meals. Cheryl Giordani had organized meals for us while Krista was in the first time, and she had said to let her know when we were ready to start up again. So today I let her know that I was ready after my sister leaves on Friday. She sent me a message earlier tonight saying that nearly 20 people are already signed up! That is just so amazing. I don't want to publish her phone number or email here, but if you're local and interested in helping out let me know and I'll forward you the contact info.
We go to UCLA bright and early tomorrow, so I'm going to cut this short. Please pray that the endocrinologist will have wisdom and insight into this strange elevated potassium problem.
[Solomon writing] My son, if you accept my words
and store up my commands within you,
turning your ear to wisdom
and applying your heart to understanding,
and if you call out for insight
and cry aloud for understanding,
and if you look for it as for silver
and search for it as for hidden treasure,
then you will understand the fear of the LORD
and find the knowledge of God.
For the LORD gives wisdom,
and from his mouth come knowledge and understanding.
(Proverbs 2:1-6)
Saturday, April 4, 2009
Weakness
Last night was the start of a rough day for Krista. There was the same old problems, but compounded with a new level of weakness because of the elevated potassium. As the weakness increased, it became difficult for her to get around, even feeling faint on occasion. We didn't have anything to help deal with the potassium because the UCLA oncologist wanted the endocrinologist to deal with it -- and we won't see him until Monday. With the danger of a potential potassium increase sending her to the emergency room again, I thought that I ought to call her local oncologist to see if we could get a prescription for Kayexalate. He thought that was a good idea, too. It took some doing to find a pharmacy that carried it, but we did find one eventually. The dose is quite a bit lower than the one she had in the emergency room so, though it is helping, it is likely to take some time to get her strength back.
Another unfortunate part of the day was that Krista's mucusitis seems to be returning. There are two sores in the roof of her mouth that have blistered up. She has not kept up as well as she should have on her mouth care because the baking soda mix builds up a salty layer that gets to be unbearable. We changed over to a plain saltwater rinse that Krista tolerates much better.
It is so nice to have Becky here with all this going on. She's been working hard cooking, cleaning, shopping, taking the kids for walks. It's been freeing me up to focus on helping Krista along. I can see that it's going to be really difficult to juggle things if they continue to be rough on her.
To you I call, O LORD my Rock;
do not turn a deaf ear to me.
For if you remain silent,
I will be like those who have gone down to the pit.
Hear my cry for mercy
as I call to you for help,
as I lift up my hands
toward your Most Holy Place.
(Psalm 28:1-2)
Another unfortunate part of the day was that Krista's mucusitis seems to be returning. There are two sores in the roof of her mouth that have blistered up. She has not kept up as well as she should have on her mouth care because the baking soda mix builds up a salty layer that gets to be unbearable. We changed over to a plain saltwater rinse that Krista tolerates much better.
It is so nice to have Becky here with all this going on. She's been working hard cooking, cleaning, shopping, taking the kids for walks. It's been freeing me up to focus on helping Krista along. I can see that it's going to be really difficult to juggle things if they continue to be rough on her.
To you I call, O LORD my Rock;
do not turn a deaf ear to me.
For if you remain silent,
I will be like those who have gone down to the pit.
Hear my cry for mercy
as I call to you for help,
as I lift up my hands
toward your Most Holy Place.
(Psalm 28:1-2)
Friday, April 3, 2009
Comfort
We woke up early this morning to get ready for our weekly follow-up appointment at UCLA. Krista took a bath hoping there would be progress. When she was ready to get out of the tub, she asked God to give her a new trick to make it easier than last time. I was in the other room at the time, but she said that she rolled over on one knee and one foot, and found that it was real easy to get up with the help of the bar. When she told me about it, I was amazed because I forgot to tell her about an email from her friend Loa who suggested what sounded to me like the same maneuver!
We drove down to UCLA, and though the trip was long the traffic was surprisingly good. There, her lab results confirmed Krista's stability in her blood levels: platelets 44,000, red 9.3, white 15.3. Everything was high enough so it wasn't necessary to get a transfusion. Her white count is actually way higher than the normal range, but the reading is due to the steroid she's taking not because of an infection. The oncologist reduced her steroid dose in half to help with this and to see if the GVHD rash comes back or not.
The potassium that we thought was under control, turned out not to be. It was up to 5.8, which is higher than the normal range but not yet dangerous. It's frustrating because she's been trying hard to minimize her potassium intake. Her oncologist is confused by this problem because this kind of thing just doesn't happen with his patients. Usually, he says, the kidneys get leaky and flush potassium. Since this is beyond him, he scheduled an appointment with an endocrinologist at UCLA on Monday. He suspects that there is a problem with Krista's adrenal glands not generating aldosterone. While we wait for the answers, Krista has to continue to eat foods low in potassium. This has been a really difficult thing for her. Food has been one of the few earthly comforts left to her, and it feels like that joy has been taken away.
While we were at UCLA waiting for the doctor, Krista saw an older woman holding a young baby. They started talking and the woman said it was her daughter's baby and that her daughter had leukemia just like Krista. Janette, her daughter, recently had a baby and then 4 months later was diagnosed with leukemia. Janette came out later and Krista was glad to get to meet her. She's in the early phases of the stem-cell transplant process, looking for a matching donor. We'll be praying for you, Janette, to find a good donor match quickly and that the transplant goes well.
But the eyes of the LORD are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death
and keep them alive in famine.
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 rest upon us, O LORD,
even as we put our hope in you.
(Psalm 33:18-22)
We drove down to UCLA, and though the trip was long the traffic was surprisingly good. There, her lab results confirmed Krista's stability in her blood levels: platelets 44,000, red 9.3, white 15.3. Everything was high enough so it wasn't necessary to get a transfusion. Her white count is actually way higher than the normal range, but the reading is due to the steroid she's taking not because of an infection. The oncologist reduced her steroid dose in half to help with this and to see if the GVHD rash comes back or not.
The potassium that we thought was under control, turned out not to be. It was up to 5.8, which is higher than the normal range but not yet dangerous. It's frustrating because she's been trying hard to minimize her potassium intake. Her oncologist is confused by this problem because this kind of thing just doesn't happen with his patients. Usually, he says, the kidneys get leaky and flush potassium. Since this is beyond him, he scheduled an appointment with an endocrinologist at UCLA on Monday. He suspects that there is a problem with Krista's adrenal glands not generating aldosterone. While we wait for the answers, Krista has to continue to eat foods low in potassium. This has been a really difficult thing for her. Food has been one of the few earthly comforts left to her, and it feels like that joy has been taken away.
While we were at UCLA waiting for the doctor, Krista saw an older woman holding a young baby. They started talking and the woman said it was her daughter's baby and that her daughter had leukemia just like Krista. Janette, her daughter, recently had a baby and then 4 months later was diagnosed with leukemia. Janette came out later and Krista was glad to get to meet her. She's in the early phases of the stem-cell transplant process, looking for a matching donor. We'll be praying for you, Janette, to find a good donor match quickly and that the transplant goes well.
But the eyes of the LORD are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death
and keep them alive in famine.
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 rest upon us, O LORD,
even as we put our hope in you.
(Psalm 33:18-22)
Thursday, April 2, 2009
Mobile Phone
Krista had her IVIG treatment this morning, though we weren't sure if she was going to be able to get it. IVIG tends to raise your blood pressure, and Krista's was really high last night and even this morning. I had held off giving her the "breakfast" medicines since she was supposed to get lab-work done at home, but when Holly (the new home-care nurse) saw how high it was she asked me to give her the old blood pressure reducer without the rest of the "breakfast" doses. That worked really well, and the IVIG went in as scheduled. (I had given her the new blood pressure reducer earlier, but it hardly did anything.)
We've been taking extra pains to keep Krista on the low-potassium diet, but it is really strange which foods are high-potassium and which foods are low-potassium. Milk and cheese are high, but butter is low. Citrus fruits are high, but berries are low. Cooked spinach is high, raw spinach is medium, and cooked collard greens are low. All this has made feeding her quite a bit more difficult, but it seems to have paid off -- Krista's labs show that her potassium level is unchanged since leaving the hospital with a normal reading. She's still low on sodium, though, despite eating pretzels and trying to salt everything else well.
Her red blood level read 9.0 today. I asked Carol, the UCLA transplant coordinator, about that. In the hospital this week her count was 10.7, and last week it was 9.7. Carol said that the high reading could have been a false high caused by dehydration, though no one had mentioned anything to us about her being dehydrated while she was in the hospital. I suspect that it was a glitch of some kind. Since the policy is that anything below 9.0 requires a whole blood transfusion, it's likely that she'll get one tomorrow when we go to UCLA for our Friday appointment.
On the other hand, it is unlikely that she will need a platelet transfusion because her platelets were still stable at 34,000! We also heard from Carol that Terry, our friend from Paso Robles who is a fellow stem-cell transplant patient, has been stable in his blood levels and hasn't needed a transfusion. Way to go Terry!
Oh, and here's a followup to yesterday's cell-phone saga. Earlier in the day, before Holly came, I got a call from Krista's cell-phone again. I thought it was really early for the guy to be calling. Maybe something went wrong with our pick up plan? It wasn't the guy I talked to the other day, though; it was his father, who does construction work and has been working a job in Monticito. He brought the phone with him and told me how I could pick it up. I had to go out anyway to deliver Krista's blood samples to the lab. It turns out that the son wasn't even the one who had found the phone -- it was his mother who works at Mission Laundry. He could easily have asked for a reward for finding it, but he didn't. I offered to give the guy some money for his trouble, but he refused it. All I could do was thank him. It is amazing how God is showing such mercy to us through people -- even people who have no connection to us!
But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved. And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus. For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God— not by works, so that no one can boast. For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.
(Ephesians 2:4-10)
We've been taking extra pains to keep Krista on the low-potassium diet, but it is really strange which foods are high-potassium and which foods are low-potassium. Milk and cheese are high, but butter is low. Citrus fruits are high, but berries are low. Cooked spinach is high, raw spinach is medium, and cooked collard greens are low. All this has made feeding her quite a bit more difficult, but it seems to have paid off -- Krista's labs show that her potassium level is unchanged since leaving the hospital with a normal reading. She's still low on sodium, though, despite eating pretzels and trying to salt everything else well.
Her red blood level read 9.0 today. I asked Carol, the UCLA transplant coordinator, about that. In the hospital this week her count was 10.7, and last week it was 9.7. Carol said that the high reading could have been a false high caused by dehydration, though no one had mentioned anything to us about her being dehydrated while she was in the hospital. I suspect that it was a glitch of some kind. Since the policy is that anything below 9.0 requires a whole blood transfusion, it's likely that she'll get one tomorrow when we go to UCLA for our Friday appointment.
On the other hand, it is unlikely that she will need a platelet transfusion because her platelets were still stable at 34,000! We also heard from Carol that Terry, our friend from Paso Robles who is a fellow stem-cell transplant patient, has been stable in his blood levels and hasn't needed a transfusion. Way to go Terry!
Oh, and here's a followup to yesterday's cell-phone saga. Earlier in the day, before Holly came, I got a call from Krista's cell-phone again. I thought it was really early for the guy to be calling. Maybe something went wrong with our pick up plan? It wasn't the guy I talked to the other day, though; it was his father, who does construction work and has been working a job in Monticito. He brought the phone with him and told me how I could pick it up. I had to go out anyway to deliver Krista's blood samples to the lab. It turns out that the son wasn't even the one who had found the phone -- it was his mother who works at Mission Laundry. He could easily have asked for a reward for finding it, but he didn't. I offered to give the guy some money for his trouble, but he refused it. All I could do was thank him. It is amazing how God is showing such mercy to us through people -- even people who have no connection to us!
But because of his great love for us, God, who is rich in mercy, made us alive with Christ even when we were dead in transgressions—it is by grace you have been saved. And God raised us up with Christ and seated us with him in the heavenly realms in Christ Jesus, in order that in the coming ages he might show the incomparable riches of his grace, expressed in his kindness to us in Christ Jesus. For it is by grace you have been saved, through faith—and this not from yourselves, it is the gift of God— not by works, so that no one can boast. For we are God's workmanship, created in Christ Jesus to do good works, which God prepared in advance for us to do.
(Ephesians 2:4-10)
Wednesday, April 1, 2009
Wonderful
I forgot to mention some wonderful things that people have done for us. When we got home from the hospital yesterday, we found a beautiful bouquet of flowers delivered to our house. The flowers were from my workplace, congratulating Krista on completing a major milestone in her recovery. They were so beautiful, that Krista insisted that I take a picture to remember them forever.Also, while we were away getting the stem-cell transplant, our neighbor, Ray, had mowed our lawn for us. He didn't just stop there -- he mowed it again this weekend while we were home. How incredibly nice!
And today, people are continuing to show us kindness -- even people who don't know us. When Krista transferred from the emergency room to 6 Central, she accidentally left her cell phone on the gurney. We tried to find it everywhere in the hospital before we left, but no one had seen it and there wasn't audible anywhere by calling it either. We left without it, hoping that it would show up in hospital security over the next few days. This morning when I was talking with my mother on my cell phone, I got a call-waiting call from Krista's cell phone. Someone from Mission Laundry had found it and was calling to return it. We agreed to meet in front of Sears at a certain time. When I got there, I didn't see him anywhere. I called him, and he said he was at the entrance to Sears. I asked him which one, because the Sears at La Cumbre Plaza has an upper entrance and a lower entrance. He just said that he was at the entrance to Sears, looking out on Main Street. Main Street? That's in Santa Maria (over 50 miles away)! It wasn't really possible for him to get it back to me, so we arranged for me to pick it up tomorrow in Santa Maria. Unfortunately, I forgot that tomorrow is Krista's IVIG transfusion and after that she has an oncologist appointment.
Meanwhile, Krista had put a request out to the local homeschool group for a wheelchair, and Kathy Short said that she had one we could use. She brought it by today, and as she and her husband, Brad, were leaving, they offered to help out with any errands I might need to run. The only thing I could think of was the cell phone, so I asked if they happened to know anyone in Santa Maria. It turned out that they did know someone who regularly travels between Santa Maria and Santa Barbara and they're going to try to arrange for them to pick it up for us and delivered it down here.
In the midst of the excitement, I was also trying to find a way to reward the boys for their hard work they did this morning weeding our patio. I tried to call their friends that they had wanted to get together with, but no one was home. Becky wanted to take them to the zoo or to the beach, and I remembered that Adam had asked last week if we could go to the beach. Trevor didn't want to go to the beach, though, because he thought the water was too cold and there wasn't going to be anyone to play with. I had almost talked him into going anyway, when the phone rang. It was Alyssa Steffen, who was thinking about taking her kids to the park or the beach. She got the whole gang back together, and they all had a great time at Campus Point beach.
All these things make such a difference to me to be able to take care of Krista, and I don't know what I would do without all this support. The smallest things take such effort now. For example, she needed a bath today. The last time she took a bath, it was really an ordeal getting her out of the tub. So yesterday, I purchased a temporary railing and installed it today. As she was getting out of the tub, her feet were slipping and I realized that I forgot to put the mat down under her. Even after I got the mat, she could only get out of the tub using every ounce of strength in her. She says that it's amazing how much you use your calves getting out of a tub.
Things like that, as difficult as they are, show that she really is making progress: she ultimately got out of the tub by herself! She felt much better today, overall, even though her blood pressure is still too high (even with the additional blood pressure lowering medication). There was only one incident of bone pain and only one meal that she needed maalox afterward. The only other unusual item was that her appetite was insatiable tonight; the more she ate, the hungrier she got -- and not just any hunger, it was a false sense of starvation. And as strange as that was, it was still preferable to not being able to eat.
Shout with joy to God, all the earth!
Sing the glory of His name;
make His praise glorious!
Say to God, "How awesome are Your deeds!
So great is Your power
that Your enemies cringe before You.
All the earth bows down to You;
they sing praise to You,
they sing praise to Your name."
Come and see what God has done,
how awesome his works in man's behalf!
(Psalm 66:1-6)
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