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)

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)

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)

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)

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)

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)