Tuesday, March 31, 2009

Purpose And Blessing

Cottage Hospital has such a different feel than UCLA. The ER was very well organized, and they got us in very quickly. We did have to wait for a long time to get the test done and processed, but the staff was incredibly attentive and caring which made it much easier to be there. Not that being there was easy. Actually, Krista was in incredible pain. As she suffered she prayed she felt that it wasn't fair that God would bless her through her suffering, so she specifically asked Him not to bless her but just to bring meaning to her suffering.

It is is so amazing how God answers prayer! Three years ago, Elizabeth, a woman around Krista's age, was diagnosed with AML and admitted to Cottage 6 Central for treatment. This was four months after Krista was diagnosed the first time, also with AML. Since Krista was further along in the treatment, the nurses asked her if she would talk with Elizabeth to let her know what to expect, and to show Elizabeth that others have made it through the treatment. This same Elizabeth was recently admitted back to 6 Central with a relapse of AML in preparation for a stem-cell transplant at UCLA. Last night, before Krista was admitted to the ER, the nurses were talking with Elizabeth about her upcoming stem-cell transplant and wishing that Krista was there to be able to tell Elizabeth what to expect. Everyone was so amazed in the morning when they discovered that Krista was there as a patient! Krista was so happy, too, because it really did bring an immediate purpose to her suffering.

But God didn't keep up His end of the bargain. No, He's much too generous to hold back a blessing just to fulfill a purpose. While Krista and Elizabeth were talking, Krista saw one of her favorite nurses, Jen, walk down the hall. Krista managed to get her attention, and in came Jen, along with Raggedy Andy. Jen was on her way to Elizabeth's room with Raggedy Andy to bring a little cheer. Wow... was Jen shocked, not only to see Krista, but to see Elizabeth there, too. It was hilarious. And, Krista had some wonderful childhood memories of Raggedy Andy, so she got the extra blessing of getting to meet him in person. Doesn't she look great in red yarn hair?

Anyway, back to Krista's medical condition: the Kayexalate was successful at reducing her potassium down to a normal level by the afternoon, so they let Krista go home. The excess potassium is probably an artifact from the medicines that she's taking, and they'll probably make some adjustments to them at our Friday UCLA appointment. In the meantime, her local oncologist added back a small daily dose of Lasix to help her urinate excess potassium out. Her blood pressure was also pretty high, so he also added an additional blood pressure reducer. At their recommendation, we bought a blood pressure monitor so we can know when to take it and when not to. In addition, a nutritionist came by to give us some information on reducing potassium intake in her diet. Oh, it's sad, because so many of the things she has managed to tolerate are now on the naughty list. But God is good and He'll get us through this trial, too.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort.
(2 Corinthians 1:3-7)

Monday, March 30, 2009

ER

Krista was particularly weak today, so she called her local oncologist to see if she could get a blood test. The symptoms seemed consistent with low red blood: weakness paleness, thumping in the ears. The oncologist thought that was a good idea, but since the home-care nurse was supposed to do labs at home tomorrow we had to make some calls to see if they could do the draw. They couldn't do it yet, because Krista isn't in their system yet -- she was supposed to be "admitted" tomorrow. I drove her to the oncology center to get a CBC ASAP.

The preliminary results came back showing that her red blood was 10.2, platelets 38,000, and white blood 14.1. Those numbers are incredible! When she left UCLA on Thursday the counts were red 9.7, platelets 37,000, and white 4.1. We went home thinking that everything must be fine. All her counts have gone up!

At home her stomach pain got worse, and she had a really difficult battle with nausea. The stomach pain was helped a little by taking a couple of sips of the "magic mix", but she got some big relief when she had a large bowel movement that had eluded her the last two days.

Just after the relief came, though, the balloon burst. Her oncologist called saying that the remainder of the labs showed a low sodium level of 123 and a life-threateningly high potassium level of 7.1. He suspected that it may have been pseudohyperkalemia, caused by a mistake in collecting the sample, but because it could be very dangerous needed us to go to the emergency room "at our convenience" to re-do the CBC. Fortunately, Becky was there to watch the kids, so we packed up (grabbing some delicious mushroom-barley soup to-go that Becky had just finished making) and checked into the ER.

The labs came back lower, at 6.1, which is still high. So they treated her with IV saline to up the sodium levels and oral Kayexalate to pull potassium out through the bowels. The good thing is that it is not life threatening and headed in the right direction, but they need to observe her overnight up in 6 central where she had her original chemotherapy. She's glad to be able to see her old nurses.

Remember your word to your servant,
for you have given me hope.
My comfort in my suffering is this:
Your promise preserves my life.
(Psalm 119:49-50)

Sunday, March 29, 2009

Cheesy Thinking

Though Krista is home, she is not yet able to be around large crowds. Her white blood count is fine, but she is on immunosuppressents so her defenses are pretty much down. She was feeling well enough this morning (mornings have been pretty good for her), so she rested on the couch and had a great conversation with her mother while the boys and I went to church. It was wonderful to see our brothers and sisters in Christ who have been so faithful in praying for us and going so far out of their way to help us. Being back is such a new thing, though, that it was difficult for me to explain how Krista is doing. Quite often, the length of recovery seems daunting to her, especially when the pain gets difficult.

While Krista was feeling good and had the strength, she got some exercise in. She managed to take two laps across the house before she felt tired. We've also worked out her eating rhythm a little better. Very small meals, eaten frequently seem to be best. On the weekends, this can be tricky, as the weekend-only dose of antibiotic needs to be taken with plenty of food and water or her stomach gets very upset.

The upset stomach didn't flare up too badly today, even after she accidentally ate some brie. I had bought it for Adam, but the soft cheese sounded good to Krista so I gave it to her too. My sister, Becky, who came today to help us out for a couple of weeks, was surprised that she ate it because she had a friend who had a transplant who was told not to eat blue cheese or brie. I remember them saying not to eat blue cheese, but didn't realize that brie was in the same group. Fortunately, I had cut off the edible white-mold casing before serving it, thinking it was wax -- duh. She has been taking anti-fungal medicine twice a day, so she is unlikely to have a problem with it, but we'll check with the doctor tomorrow to make sure. Thanks, Becky, for letting us know!

A prudent man sees danger and takes refuge,
but the simple keep going and suffer for it.
(Proverbs 22:3, repeated in 27:12)

Saturday, March 28, 2009

Reunited


It was so exciting today to have the boys come home. The Steffen's kept them at their house until now to let us get acclimated to the new environment. That ended up being a good call. Being back in the house has not cured all the symptoms Krista has. But being here is at least comfortable for her, and it's a lot easier for me to cook in as well. So having the kids now seemed much easier than having a bunch of changes all at once. The boys are doing great. It took no time at all for them to get right back to their old routines: legos, bike riding, playing with kids in the neighborhood. I took them out shopping later, and it was really neat to see how attentive and helpful they were. I really missed being with them. Thank you Cory and Alyssa for taking them in and showing them so much love!

Krista continues to have stomach pains regularly -- extra strong on the weekends due to the extra antibiotic she takes three times a day on Saturdays and Sundays. The stomach pain comes with nausea and vomiting on occasion, like last night. There's also bone and muscle pain which flare up especially at night. She feels weak most of the time, but is strong enough to make short trips around the house with her walker. Bathing is more of a challenge here than it was at the hospitality house, since we do not have a handicap bar on our tub for her to pull up out of the tub with.

Some people have asked me about how to make blood and platelet donations now that she's back. It's pretty complicated, actually.

On Tuesdays, she'll be getting a blood test at home, and if she needs a transfusion then (and chances are good that she will) it will be done locally. Local transfusions come from United Blood Services (UBS) which is at 902 Laguna in Santa Barbara. You can schedule an appointment at 805-965-7037. UBS can take donations specifically directed to a patient, but they will charge you $500 to do so. Because of that policy, I would recommend making a free undirected donation there if that works for you. If you're donating platelets here, try to do it on Friday or Saturday so that they will be available on Tuesday without expiring.

On Fridays, she'll be going down to UCLA to get labs and possible transfusions. Donations to the UCLA Bloood and Platelet Center can patient-directed at no cost. The number for appointments there is 310-206-6187. If you are donating down there, it would be best to go on Monday or Tuesday to get past the 48-hour testing period and stay within the 5-day expiration period.

Thank you all for your continuing support!

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

Thursday, March 26, 2009

There's No Place Like Home

I was mistaken when I wrote earlier that we were done with the appointment. Bolstered by the great news of her platelets sustaining, Krista really wanted to show the doctor the improvement in her rash hoping that he would let her go home. I thought it was a long-shot, but Krista really wanted to try. Since it wasn't busy in the transfusion suite, they let us stay in the comfortable chairs until it got busy. That was long enough to get in a short nap to help my groggies.

The doctor had told us that he was going to be there between 10 am and noon. The transfusion suite needed more space around 10:30 am. We went out the general waiting room hoping to get a visit in with the doctor. We didn't have an appointment, so we were at the mercy of the schedule -- which is generally very full. While we were waiting, I called my insurance transplant coordinator to find out what the deal was with this "universal coverage". The coordinator told me that there was no problem with the insurance, and that any treatments that happened after leaving would be covered as "follow up", which is just a different category with the same coverage. She further told me that they don't interfere at all in the decision making process, and that it was completely up to the doctor as to when to let us go home.

While I was talking with my insurance, we saw Monica -- our friend from Paso Robles -- checking in her husband Terry. They got called in quickly, but after their blood-draw they came out and sat with us in the waiting room. They were planning on going home today. Krista shared with them her progress and our insurance news, and they became excited to think that we might both be done with that phase. They even offered to share their doctor appointment with us if it would help.

Just after they were called in for their noon-time doctor appointment, one of the doctor's assistants came out to ask Krista about why she wanted to see the doctor. This assistant happened to be the same one that helped me change one of Krista's anti-nausea medicines yesterday when she was dealing with the worst of her nausea. She went away sounding dubious about the chances of leaving, but said that she would arrange for us to see the doctor.

We were shown to an exam room to wait for the doctor, and Krista walked in without her wheelchair just to show her capabilities. We eventually saw Monica and Terry go by, saying that they were going home. Krista was bursting with excitement. The doctor finally came in, accompanied by the transplant case manager. He asked, "What can I do for you?" and Krista said, "I want to go home." He took a look at her platelet levels and was impressed. He took a look at the improvement in her rash and was impressed, too. We shared with him and the case manager what the insurance transplant coordinator said, too. After all that, the doctor didn't see any reason to keep her there any longer. We were free to go, only needing to come back weekly for labs/doctor visit on Fridays. They are also going to arrange for a home-care nurse to visit on Tuesdays to test her blood and administer the IVIG.

Whoo-hoo! If I wasn't so tired I would have been jumping up and down. We rolled back to the hospitality house in a bit of shock over the news. After thanking God, I finally got the nap I so needed, and after that I felt much better. We talked about what to do next and decided that it was better to go today than wait until tomorrow, so I packed up our stuff, checked out, and drove home. The traffic wasn't too bad tonight, so I am now writing this entry from our living room!

By the way, the house is so clean! The Steffen's left a note for us, so I suspect that they had something to do with it. Thank you so much! Looking forward to a good night's sleep in our own bed!

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

Groggies

The steroids are definitely helping the GVHD rash already. The itching, pain, and redness are all reduced, and that's a big relief. The problem is that she started having nausea, vomiting, and stomach pain soon after she started taking them. The doctor says it's not from the steroid, since they use that same medicine to treat nausea and vomiting. It's more likely to be connected to her liver somehow. He says that his patients sometimes go for months without nausea and then suddenly vomit.

The odd part about it is that her appetite has gotten better, even with all the retching. I bought some things from Trader Joe's yesterday that I can just heat up in smaller portions to help ease the cooking problem (cooking full-sized meals and trying to store it). She still gets severe stomach pains if she eats too much (like maybe half a normal-sized meal). Nothing was soothing that stomach pain until we tried a small dose of the "magic mix" last night. It actually worked, at least enough to get her to sleep.

We had to get to bed early last night, since the office is closed on Friday and the only appointment today (Thursday) was at 7:00 am. So I'm blogging now while we're waiting for the labs to come back.

Yesterday, Krista had her weekly IVIG treatment, but this time she had a different home-care nurse. The economy has apparently taken a toll on the home-care agency, as they began lay-offs starting with our dear nurse Janice. Janice told us that she was the last one hired, so she was the first one to go. That is very sad. Krista had such a good connection with her, and we missed having our weekly American Idol discussion (but wow, did you see Adam last night... that was amazing!).

I don't know if it's just the morning groggies, but I woke up feeling achy. The feeling isn't getting any better either, and I'm hoping I'm not coming down with something. They told us that if I did get sick, that I should just keep on the other side of the room from Krista. So far, I haven't needed to take that advice.

Platelet count just got in.... 37,000! That's amazing; it's been two days since her last transfusion, and it looks like she's holding on well. It's going to be a short day here at the office... maybe I can get a nap now and try to sleep off my groggies.

Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the anger of my foes,
with your right hand you save me.
The LORD will fulfill his purpose for me;
your love, O LORD, endures forever—
do not abandon the works of your hands.
(Psalm 138:7-8)

Tuesday, March 24, 2009

And Yet So Far

We're going to have to stay here at the hospitality house for another week. The doctor confirmed that the GVHD rash was spreading, but said that the severity of it was only a 2 out of 10. He was actually pleased with seeing it because it means that the grafting has worked well and, if there was any leukemia left over from the radiation and chemotherapy, that the new immune system would certainly wipe it out. He prescribed steroids to suppress the immune reaction that is causing the rash and said that it should take two or three days to take effect. He also said that the rash should go away within two or three weeks.

Going home is getting more complicated, though. Not only are we waiting for the medical OK, but it turns out that there is also an insurance complication. With a large set of procedures like a stem-cell transplant, the insurance companies often grant a "global coverage" for the treatment. This is what happened with our friend Terry from Paso Robles, who I mentioned yesterday was having insurance complications. It turns out that it the same with us. From what I understand, all of Krista's medical treatments are covered under the stem-cell transplant umbrella while she is down here, but that may end when she goes home. I don't really understand the implications of that for future treatments yet. The medical transplant coordinator is waiting for some information from our insurance transplant coordinator to sort out the details.

I'm a little disappointed with having to draw out the time down here, but I know that this is really what needs to be done right now. Krista was disappointed at first, but now sees it as an opportunity to get stronger before heading home. God will bring us back when the time is right.

Yet You are enthroned as the Holy One;
You are the praise of Israel.
In You our fathers put their trust;
they trusted and You delivered them.
They cried to You and were saved;
in You they trusted and were not disappointed.
(Psalm 22:3-5)

Monday, March 23, 2009

So Close

I rolled Krista to the appointment today, and let them know up-front about the change in her rash, which Krista has been referring to as "pickle fingers". We weren't scheduled for a doctor visit, though -- just for lab work and a possible transfusion. It's a little crazy in their office right now because Dr. Schiller's main assistant, who does an incredible amount of work, has just gone on maternity leave. That made the already unorganized office all the more difficult to make a last-minute change.

We weren't able to see the doctor, but the nurses who saw the rash recognized it as having spread and deepened in severity from the last time they saw her. They showed it to one of Dr. Schiller's research assistants. We asked her how severe she thought the rash was and she said that it was "a little bit bigger than a little bit" -- referring to how they say a little bit of GVHD is good, but not too much.

Krista's platelets were at 19,000 on Friday before the HLA-matched transfusion, and today they were back to 19,000. That's pretty good all things considered, but she still needed to get a transfusion. Another HLA-matched bag was available for her. Hopefully that will last a few days as well.

We had a few updates from people we've met down here. Larry, the guy who was in the ICU for pancreatitis, has been out of the ICU for a while and was going to be released today from the hospital, but had a little setback that prevented that from happening. His wife said that it should happen soon though. We also saw Terry, the stem-cell transplant patient from Paso Robles, and his wife Monica. He may be discharged from the hospital Friday, depending on how things go with their insurance. Apparently, the insurance is saying that they might not cover the transition to care back home, but it will continue coverage down here. Terry and Monica are trying to get that resolved so they can leave, and I'm sure they would appreciate prayers for that situation.

While I was heating up some soup for Krista, I met another temporary resident, Maggie. She was just getting started making chicken soup, and she asked me if I was here on vacation. I filled her in on our situation, and she told me that her son was in a terrible accident. He was at a party saying goodbye to a girl who had too much to drink and the two of them fell off the second-story. She didn't say what happened to the girl, but her son severely injured his groin and needs reconstructive surgery in order to urinate. She was surprised that we had been here so long, and probably felt bad for us. She brought some of her soup over to our room for us later. Krista said she was an angel.

Krista continues to have pain and itching from the GVHD while we wait again to hear what the doctor has to say. Krista has asked me to ask you all to pray that the GVHD would go away. She seems to be keeping in good spirits over it, but this is just a really difficult thing for her to go through and she could use some relief.

I called on Your name, O LORD,
from the depths of the pit.
You heard my plea: "Do not close Your ears
to my cry for relief."
You came near when I called you,
and you said, "Do not fear."
O Lord, You took up my case;
You redeemed my life.
(Lamentations 3:55-58)

Sunday, March 22, 2009

Further Explanations

Not much happened today. Most of the day Krista continued to have stomach pains, and slept quite a bit to get through it. Some relief came later in the day when she had a successful movement. She seems to feel much better, though she tells me that the nausea is still there.

The nausea and constipation are typical symptoms of chemotherapy and radiation treatments. Even when she was in the hospital they regularly offered her stool softeners. The problem with Krista is that the stool softeners don't do anything -- her stool stays blocked and when it comes out it's hard as can be. We talked with the doctor about this a while ago, and he agreed that we could switch to natural laxatives. The laxatives work, but at full dose they work too well. Krista doesn't like the "harsh" feeling of loose stools, so she's been taking a small fraction of a dose, to minimize the number of pills she takes, only it doesn't seem to be doing much. Both times she's been this backed up, we've only seen relief when I give her about a tablespoon of flax-seed oil, mixed in with a smoothie. Today she complained about only being able to taste the oil, but at least it worked!

The rash on her hands has moved all the way up to her elbow, and the rash on her feet is moving up toward her knees. The rash is only occasionally red-colored; it's usually just raised bumps on her skin. This is definitely Graft-Versus-Host-Disease (GVHD), so we're going to see if the doctor needs to adjust anything for it tomorrow at our regularly scheduled blood work appointment. She's already on the immunosuppressents which they use to treat GVHD, but they may need to increase the dose. Another way of dealing with GVHD is to give steroids, but Krista has had strange reactions to steroids like predisone, so I think they would like to avoid this if possible.

GVHD is known to affect the gastro-intestinal system as well as the skin. Krista seems to think that her intestinal problems are GVHD, though the doctor has said that when it effects the GI tract they expect to see diarrhea, especially bloody diarrhea. She is also concerned that the GVHD rash is developing on her nose. She does have a small blemish, but it doesn't look like the bumps on her hands and feet. We'll have the doctor look at that also, just in case.

GVHD almost always happens with unrelated stem-cell transfusions. GVHD problems that arise within the first 100 days after transplant are considered acute, and anything thereafter is considered chronic. Acute GVHD symptoms, if they remain small, tend to also be transitional and should fade with time. On the other hand, large acute GVHD symptoms can be very difficult and even deadly in extreme cases. The doctors have done a good job so far with the preventative steps, which include getting a close donor match and using cord blood. These and the immunosuppressents have helped Krista's symptoms to stay on the smaller side, and hopefully they can keep them that way. It may even be that the best course of action is to keep on with the current treatment.

Please pray for wisdom for the doctors to find the correct way to treat Krista. God knows her better than anyone, and it would be good for Him to keep them in line. Also, pray that Krista would have peace through all of this, because it's easy for her to get discouraged with all these problems.

For You created my inmost being;
You knit me together in my mother's womb.
I praise You because I am fearfully and wonderfully made;
Your works are wonderful,
I know that full well.
My frame was not hidden from You
when I was made in the secret place.
When I was woven together in the depths of the earth,
Your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.
How precious to me are Your thoughts, O God!
How vast is the sum of them!
Were I to count them,
they would outnumber the grains of sand.
When I awake,
I am still with You.
(Psalm 139:13-18)

Saturday, March 21, 2009

My Bowels! My Bowels!

The King James translation of Jeremiah 4:19 says:

"My bowels, my bowels! I am pained at my very heart; my heart maketh a noise in me; I cannot hold my peace, because thou hast heard, O my soul, the sound of the trumpet, the alarm of war."

Modern translations no longer use the word bowels here, but have brought out the meaning with the word anguish. They are able to do this because it is now known that the bowels were considered by the ancients to be the seat of one's intense emotions, distress, and anguish. After today's experience, I can understand why they made that association.

It was 9:40 when I woke up this morning, and I had no idea that I slept in. Krista was just waking up too, but she had a certain hunger for breakfast at Denny's. I didn't think that sounded very good, but she was quite emphatic about it -- almost on the verge of tears. It's hard to find foods that agree with her so I thought it was worth a try at least.

We bundled up (since it was colder today) and rolled her off down the hill to Denny's. It was a loud, busy environment but Krista seemed to do fine with it. We bought one Grand Slam (scrambled eggs, sausage, hash browns, and oatmeal) to share. She nibbled at it, leaving the rest for me.

On the way back, we passed the Trader Joe's and I remembered that I needed a few things. I asked if she was up to it, and she said that she thought it might help her feel "normal". There was also an Expo (a very upscale discount home repair store) across the street from TJ's, and I mentioned that they might have a hand-held shower head that we would need for her when we got back home. So we stopped in there and discovered that the store is closing March 31, and everything is heavily discounted. (Note to Fern who had told me about the store: if you haven't been there yet, it's not going to be there much longer!). We found a shower head that might work, but it's hard to make an irrevocable, moderately-expensive purchase without having measurements. Krista was starting to feel overloaded, so we left there and made TJ's a very short visit.

The bad feelings continued in the afternoon, even after a nap, and she began to wallow in her misery. I offered medicine to help with the pain, but the medicines don't help her when she's backed up. She moaned about how it was better in the hospital when people would visit her because it took her mind off the suffering. She tried calling some friends, but couldn't talk at any length because it made the nausea worse. Fortunately, we managed to contact her friend Natalie who was home and able to come up from Torrance towards dinnertime.

They had a good distracting chat while I went out to buy some broth for chicken soup (the only thing at that point she could imagine stomaching). Unfortunately, by the time I got it and heated it up, she had been through an enormous vomiting fit -- throwing up about twenty times, including some stuff that looked like last night's dinner. I'm sure that wasn't what Natalie had in mind coming up, but she's a real trooper and didn't make a deal of it at all.

It sounds to me like Krista's intestines may be sleeping again. The vomiting isn't normal, and she hasn't had a bowel movement in two days. Fortunately, there wasn't any blood in it, so if it is GVHD it's not severe. Besides, with GVHD of the GI tract there's usually massive diarrhea, so it's probably not that at all. It's probably just the run-of-the-mill chemo blockage. You can all pray with me that the intestines will wake up soon and get things moving in the right direction. And also pray for her to be comforted in the meantime, because this kind of thing gets her really worked up emotionally.

Answer me, O LORD, out of the goodness of your love;
in your great mercy turn to me.
Do not hide your face from your servant;
answer me quickly, for I am in trouble.
(Psalm 69:16-17)

Friday, March 20, 2009

Equinox

The first day of spring brought a some new grubs for Krista. I forgot to mention yesterday that Linda sent her some clothes that we sent off with our laundry to get them ready to wear. Krista is really sensitive to chemicals, so she always has to wash new clothes before wearing them. Jeanne was called off to help out her family in San Diego today, so she arranged for Gene to drop off our clean laundry on his way to work. It was nice to get to see him briefly. Krista looked great going out in her new grubs. Thanks Linda, Jeanne and Gene for making it all come together!

Yesterday's success with pushing Krista between the hospitality house and the hospital inspired us to do it again today. It's much faster than waiting for the shuttle, and it's a really good workout for my hamstrings. It's pretty amazing that she can do this because when Krista first came out of the hospital the sensory-overload would have made this impossible. Now she enjoys the change of scenery, even if it is a little colder than she likes. A winter jacket and two blankets wrapped around her legs make it tolerable, though.

Krista's platelets were at 19,000 today. She needed a transfusion, and as she got it (HLA-matched), she had a great chat with the chaplain, Chitra. They have become friends over the time she's been here, and today we learned that her husband, Roger Cairns, is a musician who just finished making his third "standards" CD. Chitra said that his favorite artist is Mel Torme, and Krista was so excited because she got to tell her story about how, when she was 18, she met him at a concert in a revolving restaurant in Washington D.C. -- and he kissed her on the cheek! Oooooh weeeee!

It feels nice to have an upcoming weekend free of appointments. We're still keeping an eye on the GVHD rash, which flares up from time-to-time. So far, I don't think it's making any significant changes. It still feels a little edgy; if it does change it could put our trip home next week in jeopardy. And we really want to go home.

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 33:20-22)

Limitations

Krista began having flashes of GVHD trouble last night. The rash was slightly redder this morning and it looked more consistently spread across the back of her hands -- though the change was pretty subtle. We called the doctor to see if that qualified as "getting worse". I guess it didn't really. He said that we could keep on using the hydrocortizone cream and we'll just continue to keep an eye on it.

It was day almost without scheduled appointments. The one exception was for the physical therapist who came to the hospitality house. The therapist had Krista walk down the long hall and back and do all her exercises. Krista did all this going full-steam ahead. Afterward she was sore, and the soreness lasted all day.

She was still really motivated to go, though, and urged me to take her out and eat dinner at a Chinese restaurant. There's lots of Thai and Japanese restaurants in Westwood, but no real Chinese places. We found a P.F. Chang's not far from here, so I said if she could get in my Tacoma I'd take her there. Since the transplant, she hasn't been in a car so I was expecting it to be difficult. To my surprise she got in without any trouble.

We stopped at Jeanne's house on the way. She has been so kind to us, and it is so nice of her to help us out again with our laundry. Krista and Jeanne had never met. It was a great opportunity to introduce them before we go back home. Jeanne's house has some high steps to get to the door. Krista wasn't able to climb the first step, so Jeanne came down and they got to meet in the driveway. Thanks Jeanne for everything!

At the restaurant, Krista felt really hungry and ordered soup and two small appetizers before hitting a roadblock deciding on the main course. She ate the soup and had a bite of dumpling and suddenly realized that she was stuffed. Three weeks of not eating has really shrunk her stomach, but her mind hasn't yet figured it out. We changed the dinner into a dimsum outing and skipped the main course.

It's starting to dawn on Krista that she's not as capable as she thinks she should be. That can be a frustrating position, but I think she's going to try to focus on making small improvements from now on. The big pushes just make for really achy muscles. I think it's a good idea, sort of following a theme from the parable of the talents:

"His master replied, 'Well done, good and faithful servant! You have been faithful with a few things; I will put you in charge of many things. Come and share your master's happiness!'"
(Matthew 25:21)

[Ah... I forgot to mention that Alyssa took the other kids to the doctor and they all tested positive for strep! She said it was quite a lineup, one after another. They're all on antibiotics and should be ok by the time we get back, but boy did she get more than she bargained for this week!]

Wednesday, March 18, 2009

Walking In L.A.

Krista woke up pretty motivated today. Yesterday's events had her up and doing her stretches before Janice, her home care nurse, came over again this morning to administer another dose of IVIG. The IVIG is given once a week during the first 100 days post-transplant. We have really enjoyed getting to know Janice while we all wait 4-5 hours for the infusion to finish. It turns out that we have a lot in common, including interests in natural health products and homeschooling. We had scheduled the IVIG dose to be in the morning since her blood pressure is lowest at that time of the day, but today it was higher than usual because of the exercise. We'll know better next time not to do that.

Right after the dose completed, we headed out to catch the shuttle for a blood draw and transfusion. Something was wrong in shuttle-land, because it was taking a long time and there was no sign of the shuttle. I began to think that it might be faster walk to the hospital, even pushing Krista in the wheelchair. We ended up waiting more than a half-hour long for the shuttle to arrive, and when it did arrive it was almost packed full of people. The shuttle went a different route to the hospital and stopped every block to let off another rider. The ride itself took another half-hour to take us two blocks!

The labs showed that Krista's platelets (11,000) and red blood (8.2) were both low. They had HLA-matched platelets available as well as two pints of O-negative. While we waited for these to transfuse, three things happened:

1) Alyssa called us and let us know that Adam tested positive for strep. Poor guy! Apparently, Adam didn't think it hurt enough to be strep, because he said something about it not feeling like spikes in his throat. He's on an antibiotic now and he shouldn't be contagious anymore after tomorrow. Trevor and the other Steffen kids are going to be tested tomorrow.

2) I finally connected with the insurance company and discovered that our third and final attempt to get coverage for the hospitality house has been denied. I'm going to contact the transplant case manager tomorrow to see what options remain for us.

3) Dianne Bradley left a message at our hotel room. She knows Krista's father from Desert Springs Bible Church in Arizona and had stopped by to say "Hi" to Krista and to donate platelets at the blood bank. We're sorry we weren't here to greet her, but thanks for donating!

The transfusions take quite a long time. We were there at dinner-time, so I walked down to a nearby restaurant to get some dinner for the both of us. We ate and spent the rest of the evening in the transfusion chairs, and were actually the last ones out of the office at almost 8 pm. That pushed us past the last shuttle (at 7:30). We had the option of calling the after-hours transport or walking back. I opted for the later since it was such a nice warm evening out when I got dinner. We weren't the only ones out either: students coming back from campus, couples going to the theater, and people just going who knows where.

When we got back, Krista was pretty tired and got ready for bed. Soon after, she began itching all over. Dr. Schiller had always asked if her rash itched, since that is a common symptom of GVHD. I think we're going to call him tomorrow to see if that counts as getting worse. I remembered that he mentioned that the itching could be treated with hydrocortizone cream, so I walked over to the grocery store across the street to get some. There were still people walking around, so I take it that the Missing Persons were wrong: people do walk in LA -- at least in Westwood Village. At any rate, the cream may have helped. Krista fell asleep at least.

Teach us to number our days aright,
that we may gain a heart of wisdom.
Relent, O LORD! How long will it be?
Have compassion on your servants.
Satisfy us in the morning with your unfailing love,
that we may sing for joy and be glad all our days.
Make us glad for as many days as you have afflicted us,
for as many years as we have seen trouble.
(Psalm 90:12-15)

Tuesday, March 17, 2009

Target

We finally got to meet with the physical therapist, Linda, a week after leaving the hospital. She didn't have anything new, but reassured Krista that slow progress is normal and that she needs to listen to her body as to how much she can do. She kept mentioning that Krista's recovery is going to be faster than it would have been otherwise, since Krista had been running before the treatment. Linda says that Krista should write down her exercise that she does each day -- and by "exercise", she meant not just stretching and walking, but sitting, standing, and going to visit doctors, too. The goal of writing it down isn't to make sure she's doing it, but to keep her encouraged because it's difficult with chemo-brain to see progress in yourself.

And that was exactly where Krista was today, she just couldn't see the progress. She was frustrated, teary, and just wanting to go home. The emotions were really strong but not completely in line with what she was thinking, and it began to feel a little crazy to her. And then she remembered that the gynecologist had her on a double-dose of progesterone to stop her bleeding. The bleeding had stopped late last week, but I was faithfully giving her what was ordered for her. We had a scheduled office visit with Dr. Schiller today, so we added that question to our ongoing list.

Before the office visit, we first had to do a blood draw for labs. The nurse there noticed that Krista was feeling badly today, so she took a lot of extra time to talk with her and comfort her. The office visit appointment was more than an hour after we finished the labs, so Krista wanted to get away just for a change. We took a break in the cafeteria, and got onion rings and a coke just to get a little tasty treat as a distraction. Glen and Janelle joined us there and helped us finish off the onion rings and had a nice conversation together before we had to be off for the appointment.

They take vitals before they put you in the exam room, and that means temperature, blood pressure, and weight. Temperature and blood pressure were unremarkable, but Krista had shed 11 pounds of water weight since she left the hospital a week ago! You go girl!

In the exam room, we first met with a doctor who was unfamiliar to us. His badge said that he was an exchange student, and I think he was there to get some experience with the basics of an office visit. He went over our lab results (platelets 22,000, red blood 8.5) and checked the current state of Krista's symptoms. Then he left to get Dr. Schiller for the rest of the exam. He returned with Dr. Schiller and another doctor who we met with before the transplant. Krista recognized him and remembered out loud that his first name was Micky. Dr. Schiller was surprised that she remembered him that and said that it was a sign that her brain must still be working after all that chemo.

So here's the results of the exam:

1) The on-going jaundice is because the O-negative immune system is slowly killing off the old A-positive red blood cells. The liver breaks down the dead red blood cells, producing bilirubin. This is not problematic, but it does mean that Krista needs occasional O-negative red blood transfusions to replace the depleted A-positive ones until the red-blood factory gets going. She'll be getting a transfusion tomorrow, and a bag's been ordered already for it.

2) Three sets of pills are no longer needed, including the extra progesterone.

3) The rash on her hand is Graft-Versus-Host-Disease (GVHD) and the doctor wants to keep an eye on it. Her doctors in Santa Barbara aren't familiar with GVHD, so she can't go home yet.

4) When can we go home? If the rash gets worse, we're to come in Thursday and he's going to need to increase the immune suppressants. But, if the rash stays the same or improves, we're to come back Tuesday with our bags packed!

We felt such a huge sense of relief. Now, at least she has a target, and that target is just the motivation she needed to keep going. We had a little celebration time with pizza upstairs in the hotel's breakfast room. It was a nice excuse to not eat in bed for a change. Glen and Janelle had enjoyed D'Amore's Pizza in Malibu and discovered there was one just down the street here. Janelle raves about the crust. Glen walked down there and brought it back. The crust was incredibly thin, but not too crispy. I liked it enough to eat three pieces. Krista almost ate a whole piece, which was pretty amazing considering this was a new food to introduce. Having less pills with dinner probably helped too.

After dinner I called the boys to say goodnight. Trevor and Adam were feeling better and had just got back from a bike ride. Adam mentioned that his armpits were itchy. I thought it was because he had been sweating from the bike ride, but Alyssa clarified that he actually had a rash. She said that scarlet fever has been going around town, not from anyone that she knew of who Adam had contact with, though. They're going to the doctor tomorrow to see what's going on with him, just in case. She also said that the incredible ladies from her bible study came over to our house the other night and dusted and cleaned. I'm sure it needed it, but I'm just floored by the generosity. Thank you so much!

This was Glen and Janelle's last day with us before they head back to Colorado tomorrow. Thanks for spending the last month out here with us. We'll miss having you around! We'll keep you up on how things go, as we press on toward our new target: getting back to Santa Barbara.

I'll close with a little extra inspiration from the apostle Paul's journey toward making his righteousness in Christ tangible:

Brothers, I do not consider myself yet to have taken hold of it. But one thing I do: Forgetting what is behind and straining toward what is ahead, I press on toward the goal to win the prize for which God has called me heavenward in Christ Jesus.
(Philippians 3:13-14)

Monday, March 16, 2009

Labs, Echos, And Foods

The labwork this morning showed that Krista's platelets were low again, at 12,000. Fortunately, there was a patient-directed bag available. The blood bank has been working on staggering donations so we use what's donated and minimize donations that expire. I've heard that David Giordani came down today and that the Amlings are coming down Saturday to donate. If we could get a couple of people to come mid-week we'll probably be in good shape. Thank you all for helping out so much!

After the transfusion, Krista was scheduled for an echocardiogram. This was a routine exam, as chemotherapy can take a toll on the heart. It was neat to see the wonder of God's handiwork in a real-time pumping heart. I could even clearly see the valve opening to let blood flow one direction and the closing to stop it from flowing the other way. It's a really amazing, yet simple design. He also took pictures of the blood-flow to the liver, but that wasn't as clear to my untrained eye. After doing all the measurements, the tech said that they would only keep her there if there was anything suspicious, and with that he dismissed her. Sounds like a good sign to me.

We later talked with the nutritionist, because we thought that there were still some foods (like spicy foods and black pepper) that Krista was supposed to avoid. It turns out that she is free to eat as she would like to. There's no more external restrictions, only what she is able to tolerate. The spicy foods can irritate mucusitis sores, but hers are doing much better now. She's been able to eat some tougher foods, like chicken pot-pie for dinner tonight, and mild salsa with chips also were tolerated well. But what was the deal with black pepper? The nutritionist said that they don't allow it added to food for neutropenic patients because it tends to have some mold in it. She also said that John Hopkins hospital allows their neutropenic patients to put pepper on their foods, but that's because they autoclave their pepper! You all can continue to enjoy your uncooked ground pepper, though, since the small amount of mold isn't a problem for people with healthy immune systems.

After the visit yesterday, Adam ended up vomiting on the way home. It may have been motion sickness, since he hasn't thrown up since, but he still feels pretty yucky. We took good precautions while they were here, but we still pray that neither of us will get sick. You can join us in that, and in praying for the Steffens that they stay healthy as well.

But let all who take refuge in you be glad;
let them ever sing for joy.
Spread your protection over them,
that those who love your name may rejoice in you.
For surely, O LORD, you bless the righteous;
you surround them with your favor as with a shield.
(Psalm 5:11-12)

Sunday, March 15, 2009

Family Visits

Progress sometimes comes in odd places. Getting ready for the busy morning, Krista wanted to get a sponge-bath. This was only the second bath she's had (washing herself with minimal assistance) since we came here and she was surprised that it was easier than the first time, especially since she felt like she had weak upper-body strength yesterday. So we just praise God for the small, regular steps of progress we see.

Barb, Christy, and Nichole came to visit Krista this morning, bringing a beautiful "wishing well" necklace and some clothes from my mother. Barb has a friend from college who lives two or three blocks from Jeanne, and I guess it was close enough that they walked over. I hadn't thought it was all that close, but it only took about 15 minutes. My nieces are really growing up and told us stories of their recent surfing competitions. Thanks for the visit!

I can't believe we forgot to take pictures of the girls, so I made up for it with lots of pictures of the boys. (If you're reading the email version, it might be formatted with a lot of space between paragraphs, so keep scrolling down until you get to the very end!)

Adam started having a sore throat this morning, and Trevor got a runny nose. Ugh. They were healthy all week. We really wanted to see them because we didn't want the first post-transplant experience to be at home where it might feel strange for them. So we risked taking a visit anyway -- though we made them wear masks and wash their hands a lot. As you can see from the pictures, Trevor was pretty much his regular energetic self and Adam was pretty tired. They were both very happy to see Mom, especially when she gave each of them a Lego magazine and a small bag of mini-M&Ms (for later when they're not sick).










The boys did really well getting their first glimpse at Bald Krista. Now all of you can see her too... with and without a hat on. Just getting you all ready for what to expect when she comes home (don't know when, but we're hopeful it won't be too long).










After the boys left Janelle stayed with Krista while I went out and bought some groceries, then napped, and then made a small batch of chicken and potato soup for dinner. Tomatoes had been a problem previously because of the acidity on her mouth sores, but there was another sign of progress: Krista wanted to taste my chips and salsa, and thought it was yummy!

A cheerful look brings joy to the heart,
and good news gives health to the bones.
(Proverbs 15:30)

Saturday, March 14, 2009

Lazybones

Nothing scheduled today. Nothing. How nice after such a busy week. So Krista and I both sort of took the day off to recharge while we can. We even got to sleep in and get a nap or two.

Since we weren't on the go, I finally had a chance to do some cooking in the common kitchen. We started off with scrambled eggs and boiled potato cubes -- made especially bland because everything tastes salty to Krista right now. The one thing that was missing was catchup, but it ended up being specially delivered by a wonderful angel. That angel was Jeanne who not only delivered our clean laundry here, but when she heard we were lacking a little condiment she went out of her way to go to the store for that little extra that just made the meal perfect. Thank you Jeanne, what a blessing you have been!

Back to business, today's schedule was a little different than a regular weekday. There are two medicines that are weekend-only pills. It ended up taking a lot longer than normal to get through the morning regimen, but we worked it out much better with the evening ones. The problem is that Krista has a small appetite, so she ends up getting full on pills which isn't good. She does a whole lot better when I stagger the pills as much as possible.

Glen and Jannelle came by again today but we were pretty boring company. Krista took a nap much of the afternoon, and I put in a few hours catching up on programming work that I haven't been able to get to all week. Tomorrow should be a more entertaining day, though, since we are expecting my sister-in-law Barbara and her daughters for a short visit in the morning, and then our boys will be coming down here to spend the afternoon with us. We are so excited to see them!

A number of people have asked me for the address where we're at now. I completely forgot to do that with all the activity this week. The address is:

Krista English
Room 160
900 Tiverton Ave.
Los Angeles, CA 90024

I have also been frequently asked how long we will be here. I wish I knew. The most recent info I have is that the only thing keeping us here is the lack of a functional platelet factory. Once Krista starts producing her own, we should be able to go. Krista says that she knows her body and thinks that it will be a week or two. Thank you all for your incredible love and support until then!

[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)

Friday, March 13, 2009

Resting Better

After a restful sleep, we got off to a very slow morning. I felt like something was blocking my ability to think clearly, almost like being hungover. We decided that even having the smelly wheelchair closed in the bathroom wasn't working, so I called the rental company to get it returned. I had to leave a message with them, but arranged to put the wheelchair at the font desk just to get it out of the room. Some people have asked me where the smell is coming from. I'm not completely sure about that, but it seems like it's just inferior materials. The hospital wheelchairs don't have any smell.

Later in the morning, Krista developed some very dense pitikia on her feet after using the commode. That is usually a sign that her platelets are dangerously low, so we got her back in bed and had her rest until our afternoon office visit.

I took advantage of the down-time to take care of some errands. JJ Gobel was coming down to donate platelets and brought down our mail and other stuff that Monica put together for us. I went to meet him at the blood bank. I didn't see him right off so I met with Jaime, who seems to run the place, to ask a few questions about delays we've seen. He says that there is at least a 48 hour delay to make a donation available for transfusion. Once the platelets are donated, a sample is shipped to Arizona for testing. That testing has to take place, even for donors who have given before. I eventually caught up with JJ, who was being interviewed by Julie who I had previously only known as a voice at the blood bank. There they are on the right. JJ ended up not being able to donate today, but I really appreciate the attempt and the delivery. Thank you!

The next stop brought me to Jeanne Axelrod's house. She let me know that she loves doing laundry, and my laundry pile was getting to be pretty big. I wish I could have stayed longer, but I felt bad about leaving Krista alone for too long with her platelets being so low. Thanks Jeanne for helping out like that!

When I got back, Glen and Janelle were already there. Janelle hard-boiled some eggs for an egg salad sandwich (minus the bread), an easy-to-chew and easy-to-store food for Krista to be able to take a few bites from. Then we all took the shuttle together over to the hospital for our afternoon office visit. We met another couple waiting at the hotel shuttle stop; the husband was in a wheelchair as well. We got to talking and discovered that they are from Paso Robles and he received a stem-cell transplant for a rare form of lymphoma ten days before Krista and was just recently discharged. They shared many of the same complications, including liver failure and a lengthy stay in the ICU. It was encouraging for both of us to see another couple going through the same things she's been through -- hopefully it was the same for them.

While Krista got her blood drawn, Glen and Janelle went to the cafeteria to get me a larger lunch to keep me running. When the labs came back, I was shocked to learn that Krista's platelets were at 22,000. I couldn't believe it after seeing the pitikia this morning, but the nurse reminded me that 22,000 is still a low platelet condition that can cause pitikia. They don't normally give a transfusion at this level unless there's bleeding (which fortunately there wasn't). I was nervous about going into the weekend without getting a transfusion. If they dropped and she starts bleeding, we would have to take her to the emergency room. Fortunately, HLA-matched platelets were available, and with a special doctor's override of the rules, the transfusion boosted her up to 46,000. I think I'll sleep better starting off with that much.

Many are asking, "Who can show us any good?"
Let the light of Your face shine upon us, O LORD.
You have filled my heart with greater joy
than when their grain and new wine abound.
I will lie down and sleep in peace,
for You alone, O LORD,
make me dwell in safety.
(Psalm 4:6-8)

Thursday, March 12, 2009

Krista did much better today. We had a new milestone: she can now climb into bed instead of having to sit and roll! Once again, the key seems to be keeping on top of the pain. Doing that is now part of what seems to be my new full-time job as a pharmacist. I finally figured out a good method for keeping track of what she's supposed to get and when, what meds can be given at different times, which ones need to be taken with food or extra water, and which need to be taken on an empty stomach. This has been a surprisingly difficult thing to juggle.

While I worked out the schedule, the rest of the IVIG dose went in with no problems. Janice, our home care nurse, was very sweet; she brought Krista some extra clothes that her daughter and son weren't using anymore, including a brand new robe her son didn't like. What a blessing, since the medicines have swollen Krista up a number of sizes. This swelling is likely to last as long as she is taking so many of these medicines, maybe up to a year.

I apologize for the rushed post last night. I wasn't feeling very good -- I had a headache and was feeling nauseous. The culprit wasn't an illness, though; it was a horrible smell that comes from the wheelchair I had parked right next to my bed. I didn't know it was so bad, but I had a horrible night's sleep last night because of it. I finally moved it into the bathroom since I can close the door there and I can deal with the smell for the short time I'm in there. We tried exchanging the wheelchair for an older one, but it turned out that the one we had wasn't even brand-new! The smell is so bad it gets into Krista's clothes after she uses it. No wonder she's been having such a rough time since we came here. The hotel has some loaner wheelchairs which don't smell, and one them fits onto the shuttle. We used it today to go to the afternoon office visit and it made all the difference in the world. She wasn't nearly as worn out by the experience.

It's not that the office visit was all that different of an experience. There was still the endless waiting, but we did learn something that we can change to make things go smoother next time. The nurses had been telling us to just show up an hour early for the appointment to get her labs done, but doing so put us at the bottom of the priority pile. The trick is to make an appointment for both the labs and the follow-up, and that's how it's going to be from now on.

Labs were rushed, and all we got from them were that Krista's platelets were at 6,000. I don't know why, but she ended up getting another random platelet transfusion. We prayed for a good match, and so far there haven't been any fevers. We'll find out tomorrow afternoon if she got a boost from it.

Teach me to do your will,
for you are my God;
may your good Spirit
lead me on level ground.
For your name's sake, O LORD, preserve my life;
in your righteousness, bring me out of trouble.
(Psalm 143:10-11)

Wednesday, March 11, 2009

Getting Perspective

I am completely at a loss as to what to say tonight, so forgive me if I ramble.

Krista's "disconnected" feeling is a symptom of neuropathy. That is a fancy way of saying that the chemo zapped her nerves. It's really common and she's had it before, but not this bad. Knowing that it is neuropathy has helped her some, mainly because we know how to manage it a little better rather than just giving into it.

The office visit today was frustrating. Krista, being less connected to what her body is actually doing, thought that she was having more blood clots when we got there. Bleeding means an automatic platelet transfusion, so they ordered some before they got the labs back. But when she went to the bathroom, she found out that there were no blood clots and no bleeding. The blood bank had no patient-directed platelets available so they delivered random platelets; and just before they started the transfusion, we got the labs back. Krista was at 20,000. So we racked our brains for a long time trying to decide whether it was worth getting the random platelets and possibly dropping her levels further and thereby needing another matched transfusion tomorrow, or just coming in tomorrow and getting a matched transfusion. We decided to wait for matched platelets -- so there's another late office visit scheduled for tomorrow.

Another frustrating aspect of the visit was the discussion we had about the random platelets. Yesterday we got patient-directed ones that worked great, but today there were none. The blood bank said that there were some units at the bank that expired last night at midnight! Ugh. They recommend trying to stagger out the donations into smaller groups, more frequently. I wish I had known that earlier, since Dave Bramson brought a car-full of people from Calvary Chapel Santa Barbara down to donate today -- I think there were 8 in all. I guess not all of them were able to donate platelets (some gave red blood instead) so it worked out well anyway. God knows how to organize it better than I do anyway. I wanted to connect up with them but the schedule just didn't permit me to get away. Thanks guys for showing God's love in such a tangible way!

Oh, there was another a silver lining in the cloud, too. While we were in the office, the hospital chaplain came by. Krista was feeling so frustrated with her body, and kept saying that she felt like an old woman -- not being able to walk, having aches all over, etc. The chaplain listened really well, and encouraged Krista not to think of herself as an old woman, breaking down, but as a baby, growing into something new and unfamiliar. Krista says, "Now I know why babies cry all the time!"

After the office visit we returned to our room (Ty, the shuttle driver, was an excellent driver and I didn't get in trouble today!) to meet the "home care" nurse, Janice. She was really good and thorough, having worked with the City Of Hope's transplant wing as a nurse. She asked Krista all sorts of detailed questions about her treatment and helped us sort through a number of things we didn't really know how to formulate questions about for the doctors. Krista's blood pressure was high so she couldn't run the IVIG very fast, and it took way longer than it would have otherwise -- she was here almost until 10 pm! She had to stop the drip because Krista developed small tremors from a new anti-nausea medicine we got at the doctors today. That got resolved before she left, and our doctor worked it out with her to come back at 7 am tomorrow to finish the IVIG. I've got to get to bed!

BTW, I spoke with my mother earlier in the day, and dad's surgery took 4 hours and was a success. He's recovering in the hospital overnight and then will return home tomorrow.


I am still confident of this:
I will see the goodness of the LORD
in the land of the living.
Wait for the LORD;
be strong and take heart
and wait for the LORD.
(Psalm 27:13-14)

Tuesday, March 10, 2009

Waiting and Aching

As wonderful as it is to be free from IV tubes and all-night prodding, it certainly isn't a panacea.

The platelet roller-coaster continues along its up and down course. When Krista went to bed last night she had medium-sized blood clot and another a few hours later. After all the activity with the transfer, we weren't surprised by it. The clots are due to low platelets, but unless there's other signs of bleeding (which there weren't) it can wait until after the office visit in the afternoon.

Krista woke up in the morning feeling "disconnected" from her body. There was pain all over, especially in her stomach, but somehow it felt like she couldn't "feel" the rest of her body unless touched. Pills and breakfast were forced down, but the strange feeling continued until almost noon, along with a strange nauseous feeling like there was something near her gag-reflex in her throat. It took almost an hour to get ready for our 1:30 pm appointment, but we managed to wheel out and catch the shuttle to make it with five minutes to spare.

Our promptness was not rewarded, however. We waited to get in. We waited to get to the blood samples. We waited for the results which never came, so they took another set of samples. And we waited again for the results, which showed that there was more waiting to do since Krista's platelets were down to 6,000. So waited for the platelets, which ended up being another A-positive, dark-colored, patient-directed bag (yeah donors!). Then we waited for the platelets to transfuse, and by the time it was all over, it was almost 7 pm! Did I mention that Krista was in and out of the disconnected/pain/gag condition the whole time?

During all that waiting, Krista had one bright moment: a visit from Bindu, the stem-cell wing coordinator who has been such a source of encouragement. Krista got to share with her how much pain she's been in and how strange she feels. Apparently, this is common with stem-cell transplants, and it may be a sign of Graft-Versus-Host Disease (GVHD). The doctors want to see a little of this, because it shows that the graft is working and it will kill off any leukemia that might have slipped passed the radiation/chemo assaults. But too much GVHD can be really dangerous, and the doctors are going to be monitoring her daily in case they need to make some further corrections. Krista was feeling like she didn't know if she could make it through this level of difficulty, but Bindu reminded her of the progress she has made, and how others have made it through it as well. That cheered her up, but I can see that this is going to be a really steep hill for her to get over.

Getting out of the transfusion so late put us in danger of missing the last shuttle again. We made the call at 7:10 pm, and practiced waiting again. There was a lady there that I recognized from the shuttle ride last night, and we discovered that she was out here from Phoenix with her husband, Larry, who was supposed to have a brief visit but ended up in the liver-transplant ICU because of pancreatitis. You can join us in praying for Larry, as that could be a very dangerous problem. After sharing our reason-for-being-here stories, keeping an eye out for the shuttle all the while, we began to realize it was past 7:30 pm, when the last pickup is supposed to take place. Our new friend called for the shuttle again, and around 7:45 pm the shuttle finally showed up. And guess what... I got reprimanded again for keeping the driver there late.

Tomorrow starts early... we have to be at the doctor's office at 9:00 am this time so that we can get another platelet transfusion and make it back to the hotel for a 4-5 hour IVIG dose in the afternoon. Is this supposed to be easier?

Though I walk in the midst of trouble,
you preserve my life;
you stretch out your hand against the anger of my foes,
with your right hand you save me.
The LORD will fulfill his purpose for me;
your love, O LORD, endures forever—
do not abandon the works of your hands.
(Psalm 138:7-8)

Monday, March 9, 2009

Freedom

It's finally here... we have left the hospital.

We weren't quite sure how it was going to go when we got up in the morning. The doctors came in and said that Krista was doing well, but didn't say "Pack your things and get out of here." This was another discharge much like the discharge from the ICU. There's always a last minute something -- or somethings.

One last minute something was a red blood transfusion. Yesterday, her count was 9.0 and the story was "no transfusions unless it drops down to 8.3". But today, 8.9 meant a double transfusion. Go figure.

The blood took a long time to get here; long enough for another something -- a transport arrived to take Krista off to get an ultrasound that was supposed to have been done last Friday. Mia McElwee had dropped by just before the transport arrived. She had been donating platelets and wanted to drop some gifts off for Krista from her and from Jeanne Rodkey. (Thank you both so much!) Anyway, we were surprised by the ultrasound but Krista really did need to get it done, so we invited Mia to go along for the ride (down the elevator). It probably wasn't the visit she expected, but it was very encouraging to Krista.

Much of the day was spent packing and trying to figure out how to get all that stuff out of the hospital and into the hospitality house. There's not really a place for loading and unloading stuff at this hospital. There's a valet parking entrance, there's a patient drop-off circle, and there's a parking structure where they charge $11 no matter how short you park. Being a complete cheapskate I wanted to avoid the parking structure. In the end, Glen "parked" in the red-zone by the valet, and he and Janelle managed to fit everything in their Jeep except for two pieces of luggage which I was able to manage on the shuttle.

Leaving the hospital was quite an adventure. Krista had become pretty accustomed to the the sensory-deprivation of her room and was rolled out in her wheelchair into a buzzing metropolis on the first floor filled with people moving briskly in every direction. As we waited for the shuttle, I received a call from my sister, Rachel, which (unknown to me) made Krista nervous. She didn't know how it was all going to work catching the shuttle and was on pins-and-needles about the whole thing. I had to interrupt the call when the shuttle arrived quickly and out we rolled into a three-lane valet roundabout, with the shuttle on the furthest lane. The driver shut the door just as we got there, and I had to knock to get him to open it up. Meanwhile, Krista was in the middle lane of the roundabout and felt like a car was going to run her over! Fortunately, nothing bad happened -- the driver opened the door, scolded us for showing up for the last shuttle of the day (huh?), and loaded her onto the back of the shuttle using the attached wheelchair lift. The ride was a bit bumpy, but it gave Krista's nerves an opportunity to unwind from a different distraction.

While Glen and Janelle unpacked the car Lance and Natalie arrived from Torrance to bring some more comfortable clothes for Krista. The long stay in the hospital has caused her body to no longer fit well in her normal clothes. This was a very sad realization for her, since she had lost so many inches before the leukemia relapse. I keep reminding her that she did it once, and she'll be able to do it again -- only a bit slower this time. Thanks to the Newharts for the clothes (and the dinner)!

I'm exhausted now and need to get to sleep... we have a doctor appointment at 1:30 pm tomorrow, and I need to get a good jump on the day in order to be ready for it.

In my anguish I cried to the LORD,
and he answered by setting me free.
The LORD is with me; I will not be afraid.
(Psalm 118:5-6b)

Sunday, March 8, 2009

Get Me Out Of Here!

Krista's platelets were at 26,000 this morning and once again the doctors told us that if she continues to sustain them that she can go Monday morning! The idea is not that she's all better, but that she will heal better if she's not under all the hospital restraints (like IV tubes and infusion pumps) and is able to sleep through the night without being prodded all the time. And at that level Krista is ready to go.

Another good sign that things are progressing is that she started having intense bone pain today. Pain is good? Yes, it probably is -- because it means that her bone marrow is working hard at producing neutrophils. They stopped counting neutrophils once the white blood count got into the normal range. Her white count was up again, to 8.32 this morning, so they are going to stop giving her Neupogen, a drug that increases the production of neutrophils. So now we just need the platelet production to get going and she should be doing much better.

I mentioned that the platelets were doing well this morning, but there is still some fluctuation going on. She had some much smaller clots this afternoon and her platelets dropped to 14,000. The doctors gave her a platelet transfusion and upped her progesterone dose to stop the bleeding. This was effective and they are saying that unless she has more bleeding or any fevers tonight, she still should be able to leave tomorrow. [The platelets today were patient-directed, 3-units from an A-positive donor, and they were darkish-colored. Much thanks to all who have donated -- they are finally getting used, and until platelet production starts she will most likely continue to need more.]

Krista wanted me to ask everyone to remember to pray for our kids, too. Thanks to to loving care of the Austin family (who had them the past two weeks) and to the Steffen family (who will have them until we return), they have been doing really well. Once we get used to the new surroundings at the hospitality house, we would like to have them visit. But mommy has been through a lot, and they haven't really been kept up on the what the treatment has done to her. Before we came down here, we prepped them for some of the changes, like making a cartoon version of Krista on the Wii that had no hair, lovingly named "Bald Krista". The kids had fun with that, and we reminded them tonight that mommy really is bald now, just like Bald Krista (except for the big head). But the changes are more than that, and we pray that the kids will be able to "see" mommy though all of her physical changes and weakness. We have always wanted to raise kids who have compassion for how others feel and this will be something of a testing ground for that. So please pray that they will be ready when the time comes, and for us to not worry about it.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
(Philippians 4:6-7)

Saturday, March 7, 2009

Assorted Reflections

The new medicine that Krista is on has really helped (not to mention the extra platelet transfusions she's received). The blood clots are nearly gone now, and her bleeding has greatly slowed. She's really weak endurance-wise from the experience, but her muscle-strength is still good and she has been able to get up a bit today. The platelet count was still too low (13,000 this morning), but she did get a HLA-matched transfusion from the Red Cross this evening that brought her up to 43,000. Her white blood count was at an incredible 7.3 today (normal range is between 4 and 10), so I think they expect the platelet production to start to pick up soon.

My mother and father came to visit today, and they and Janelle and I all recounted stories to Krista about some of the things she didn't remember from the liver-failure incident. Some of them were quite funny, like the time she insisted on keeping her glasses on so she could see clearly, even though her eyes were shut! It was good to see my folks, especially my dad, since he is going in for surgery on Wednesday. Dad's a bit anxious about the procedure. I would ask all you praying people out there to pray for him to have peace about how it will go, for a safe, successful procedure, and for a speedy recovery. Mom's going to be taking care of him at home for a while after the procedure, so we're not sure how long it will be until we can see them again.

My folks were kind enough to take care of my laundry this afternoon, too. While they were gone, Krista asked to watch a video that Erica had given us, Thou Shalt Laugh, which is a concert of stand-up comedy acts by Christian comedians. We got some good laughs from it, but when we paused it for one of the endless nurse interruptions, Krista, Janelle, and I all fell asleep! I guess we all needed a nap.

I forgot to mention the other day that Krista's mouth sores have improved quite a bit. She graduated from the "pureed foods" menu to the "mechanical soft" menu yesterday. The meals on that menu are closer to normal foods, so she's been able to eat scrambled eggs, diced potatoes, clam chowder, chicken salad, canned fruits, etc. The added variety is a welcomed change!

As quiet as it was in our room today, the rest of the transplant wing was quite the opposite. This morning we had a hard time getting to see nurses and doctors because one of the patients here became critical. Krista has such a heart for people going through those difficult times, and she prayed earnestly for this one. Afterward, she told me that this was why God wanted her to stay here this weekend, so that she could pray for another in trouble.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows.
(2 Corinthians 1:3-5)

Friday, March 6, 2009

A Gory Day (Not For The Faint-Of-Heart)

The long expected move to the hospitality house was delayed today because of a setback that began last night. I think I mentioned yesterday that Krista had an increase of bleeding, though it wasn't all that bad. Around 4:00 am they drew some blood to check the levels and shortly after that she lost about a pint of blood in enormous clots. The red blood count that they measured was 10.1, but the doctors could see that was definitely not reflecting the current situation.

Krista and I prayed about the problem soon after and asked Jesus for healing and wisdom. After we finished praying, Krista said that she felt like there was a reason that we weren't supposed to leave yet; that there was someone else she was supposed to meet here first. I wasn't sure what to make of that, but agreed that it was better to stay here until the bleeding stopped.

The previous diagnosis was that the bleeding was from a hematoma near the urethra from when the bladder catheter was taken out. The hematoma is still a problem, but it was visibly obvious that it was not the cause of this bleeding. The team assumed that it was due to a low-platelet induced period, and gave her one pint of platelets (to try and stop the bleeding) and a pint of red blood (to offset the loss). To give you an idea of how much blood was lost today, her red count after the transfusions was 8.5. No wonder she felt weakened today! They are giving her two additional pints of red blood tonight to bring her back to a good level.

The platelets that they gave her were from a random donor. I don't know why the patient-directed donations haven't been available. I put a call into the blood bank but haven't heard back yet. Thank God that the platelets she got were a good match! Her platelets are up to 29,000 this evening, and it does seem to have slowed down the bleeding.

There was some reluctance from the team to bring in a gynecologist, but at our insistence they finally did. Apparently, the gynecologist we saw last time was actually a student, and with all the guess-work that had been going on with the various hormone therapies, we wanted to stop guessing and get a real diagnosis. A real gynecologist showed up this time and did a real exam. She even had a good explanation for what the bleeding was. She said that the estrogen IV Krista received caused a buildup of tissue. When the IV was stopped the tissue naturally begins deteriorating and would typically be cleared out with a normal period. With the low platelet condition, however, Krista began to have a "super period". This gynecologist prescribed progesterone to thin the tissue, saying that it should stop the bleeding once the platelets stabilize.

We don't know if the gynecologist was the one that God had intended Krista to meet or if there's some other appointment coming up this weekend. Meeting with her was certainly an answer to prayer, though.

Janelle was feeling better today, and she did really well with all the gory stuff. Once the grisly activities were wrapped up, Natalie and Carissa came up from Torrance to visit. Having them here was really nice and it helped keep Krista's mind off the trauma of the day. Thanks for being such good friends and family!

Dear friends, let us love one another, for love comes from God. Everyone who loves has been born of God and knows God. Whoever does not love does not know God, because God is love. This is how God showed His love among us: He sent His one and only Son into the world that we might live through Him. This is love: not that we loved God, but that He loved us and sent His Son as an atoning sacrifice for our sins. Dear friends, since God so loved us, we also ought to love one another. No one has ever seen God; but if we love one another, God lives in us and His love is made complete in us.
(1 John 4:7-12)