Day 24: Waiting

Krista continues to be doing well with her recovery. Her white counts are still at the high range of normal (9.4) and her platelets and red counts are stable. The reduction of IV nutrition is matched well with her eating abilities - today she discovered another off-the-menu item she can eat: hard-boiled egg. She seemed a little more tried today than yesterday, and she did sleep a lot. I spoke with her tonight and she felt like she needed a break after the physical exertion yesterday. She still got a shower and took a walk today on her own. That's going to make it so much easier than last time when she gets out.

We talked to the nurse coordinator today about arrangements after discharge. We verified that she will need to stay local to the hospital for a time after discharge, but at the moment there are no openings in the cottages at the Village. Boo! Krista just loves the way they do things at the City of Hope (tonight she said, "I can truly say that I love this place"), and it would be so disappointing not to be able to take regular walks on their beautiful grounds. We are on the waiting list so pray for an opening soon!

I drove home to spend some time with the boys this weekend. It's so wonderful all the experiences they get to have, and for my mother being able to stay with them the last couple of weeks. She's gone back down to Carlsbad to take care of some things for a time and then will come back. What a huge help that is; thanks Mom! I'll end tonight reflecting on God's provision for the situations He leads us into.

As for God, his way is perfect:
The Lord’s word is flawless;
he shields all who take refuge in him.
For who is God besides the Lord?
And who is the Rock except our God?
It is God who arms me with strength
and keeps my way secure.
He makes my feet like the feet of a deer;
he causes me to stand on the heights.
He trains my hands for battle;
my arms can bend a bow of bronze.
You make your saving help my shield,
and your right hand sustains me;
your help has made me great.
You provide a broad path for my feet,
so that my ankles do not give way.
(Psalm 18:30-36)

Day 23: Change Of Plans

Krista had another really good day today. I had a bunch of errands to do today (including getting her phone fixed -- thanks Eric!), so I wasn't around to witness some of it. She walked around, did physical therapy and music therapy. She's eating more of her food now, so they are able to have her on the nutrition drip only during the day. All in all, she's doing so well that she says she doesn't need my help right now. She's sending me home tomorrow!

The doctors are not going to discharge her this weekend, but we're going to shoot for discharge next Friday. That will just work out better for everyone. I think it's important for me to be there for it, because they have all these doctors come in on the day of discharge and give instructions. The daily pharmacy list is quite overwhelming, and she's going to need help creating a way of tracking when to take what. We tried a number of different approaches last time and I think that the chart I put together ended up working well for her. Another rule they have once she goes outside is that they want her to minimize her contact with people for a while to prevent exposure to viruses particularly. So she'll spend the next week in the nice clean hospital getting stronger and having them keep a close eye out for GVHD.

Krista had to cut her physical therapy session short because they were working on arms and there's a suspicious painful hardening on her lower arm that zapped her when she extends in a particular way during the exercise. We've heard from others who have had stem-cell transplants that hardening like that is sometimes an effect of GVHD. She's been showing the nurses and they all say to show the oncologist tomorrow. It's not too bad right now but, if it is GVHD, we're hoping it doesn't get worse because that particular kind can lead to some debilitating problems with the arms and hands. We'll let you know what they say tomorrow.

Teach me your way, Lord;
lead me in a straight path
because of my oppressors.
Do not turn me over to the desire of my foes,
for false witnesses rise up against me,
spouting malicious accusations.
I remain 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 27:11-14)

Day 22: Pressing On

Just a short update tonight since I have an early morning meeting and need to get to bed.... Krista's white blood count up to an incredible 9.4 today! Since the normal range is 4.0 to 10.0, we asked if they were concerned that the count might be too much. So far, there's no concern -- it's just good news.

Krista continues to do very well on the new pain killer. There was a vomiting incident today, but it was not the suffering kind. It came out of the blue without warning and afterward the nausea was helped by the anti-nausea meds. Otherwise, she's been eating better and holding it down.

No new word on discharge. I'm going to call the case manager tomorrow to see if we can get any more information about what it would be like. We ran into our friends Kathy and Jeff from Santa Barbara (I met Kathy on Day 8) while on a walk around the floor tonight. Jeff is possibly going to be discharged Friday to go back home. Kathy mentioned that the Village was quite full right now, so I need to find out if we will even have that option when Krista gets discharged.

I'm also planning on taking Krista's phone to a local repair guy tomorrow, Mobile iPhone Repair LA. Eric is the owner/operator there and his yelp.com reviews look really good. Hopefully he can get the phone restarted so Krista can keep up with her email.

Your love, Lord, reaches to the heavens,
your faithfulness to the skies.
Your righteousness is like the highest mountains,
your justice like the great deep.
You, Lord, preserve both people and animals.
How priceless is your unfailing love, O God!
People take refuge in the shadow of your wings.
They feast on the abundance of your house;
you give them drink from your river of delights.
For with you is the fountain of life;
in your light we see light.
(Psalm 36:5-9)

Day 22: Relief

This morning was really rough for Krista. The bone pain she's been dealing with as her body's in rapid blood production was excruciating, and the pain killer just wasn't doing the job it used to. (Her white blood count today was 6.3!) The pain specialist visited this morning in the midst of this suffering. He is so awesome! He listened to Krista's complaints without discarding her feelings, asked questions to clarify, and then decided to take her off the old pain killer and put her on a different one.

The new pain killer wasn't available until after lunch. By that time, Krista had slept through the morning being heavily medicated with the old pain killer. The new one was introduced and it seemed to help some, but not enough to get relief. She kept pressing the button every 10 minutes just to keep the edge off, but would have to call the nurse for the hourly bonus dose to keep going. The pain specialist came in later to see how it was going, and decided to adjust the dosage. He told me that he started her out on a very conservative dose and had no problem upping it based on how she responded.

It is wonderful to see how the right dose has helped poor Krista. She can take the new pain killer without any nausea and it doesn't make her drowsy - and at this dose, her pain is down to a really bearable level. She's had a really good evening, looking much more alert and stable when she gets up... and she even read some from a book she brought with her. She couldn't eat the pot roast she ordered, but a second order worked better and she ate some cream of wheat, yogurt, a Popsicle, and a banana quite well. I've gotten used to her looking miserable in the evening, but now she's looking great. Such a relief!

By the way, thank you to everyone who has sent cards to Krista in the hospital. They're all going up on the wall with the Go! Fight! Win! decoration. What a great encouragement!

Do you not know?
Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He will not grow tired or weary,
and his understanding no one can fathom.
He gives strength to the weary
and increases the power of the weak.
Even youths grow tired and weary,
and young men stumble and fall;
but those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
(Isaiah 40:28-31)

Day 21: Balancing Act

Each day I get more and more amazed at Krista's progress. Today her white blood count rocketed up from 1.7 to 4.1! That is just incredible... she's already in the normal range for white blood. (Most healthy people have between 4000 and 10000 white blood cells per microliter of blood, and they call this range 4.0 to 10.0). There's not much keeping her back from being discharged now, though it still is likely to be this weekend.

One of those "not much" is that she needs to be able to get enough nutrition on her own. Right now she's being fed through her bloodstream by a constant IV infusion of nutrition. They recently added some insulin to help her process the nutrition better, since her blood-sugar level was a little high. Today they also added lipids to the nutrition mix (apparently that's something they do 3 times a week normally). Instead of all that, she needs to be eating regularly (and keeping it down). We discovered that she's not ready for heavier foods like biscuits and gravy or grilled roast beef and provolone hoagie. But she does seem to do well with cereal, yogurt, soup, and puffed rice cakes (not all at the same time). The rice cakes seem to be particularly helpful to counter the "I need to eat now or I'll throw up" attacks that are continuing. 

We've also noticed that she's reacting to too much pain medicine given at once. She can give herself a small dose of the pain medicine once every 10 minutes and she seems to be ok with that (though it sometimes requires a nibble at rice cake). When the pain gets severe, she can request a boost from the nurse once per hour. Every time she gets that dose now, she instantly vomits without warning. We talked with the pain specialist about this and he agreed to try a lower dose. The bad effect is happening even with today's reduction. Tomorrow we'll try an even lower dose.

The cause of the pain is the very thing that is making her progress so wonderful. That new blood factory is just working so hard it hurts. Often times, it hurts a lot. I did a little research on it and couldn't find anything that they weren't already doing to help her through this pain. The muscle relaxer only takes the edge off, but it really takes pain killer to get through. Hopefully we can find a happy balance between addressing the bone pain and causing stomach upsetness. This inbalance is working against her being able to be discharged.

Another one of the "not much" keeping her her is her physical abilities. She will need to be able to get around on her own a bit better. Today she did really well. She left the room for the first time since the transplant. The physical therapist came and helped her walk two laps around the floor. They want her to do that twice a day, but she was knocked out this evening fighting the nausea/pain battle so we only got the one time in today. We'll try again tomorrow. In the meantime, we bring her to Jesus in prayer for healing.

News about him [Jesus] spread all over Syria, and people brought to him all who were ill with various diseases, those suffering severe pain, the demon-possessed, those having seizures, and the paralyzed; and he healed them.
(Matthew 4:24)

Day 20: Accelerated Schedule

The white blood count continues to improve. Today it was an amazing 1.7. The oncologist says that if Krista continues at this rate that they may be able to discharge her from the hospital in about a week! This rapid production continues to cause quite a bit of lower back pain. She had been fairly low on pain killers, but now she's needing to get periodic boosts along with muscle relaxers which also seem to help some.

There's also a strange stomach thing going on. She is eating small amounts, but periodically she gets an intense feeling in her stomach that feels like if she doesn't eat something she will throw up. Once it actually happened; most of the time, however, if she eats a small amount the feeling goes away. We remember this symptom from the first transplant, where the only thing that stopped it was eating a small chunk of cheddar cheese. Maybe this is something we will have to be prepared for again.

Krista's phone is not functioning again after dropping it. I'm looking into local iPhone repair shops, and if anyone has a recommendation near Duarte, CA, please let me know. In the meantime, Krista won't be taking any calls or checking email.

Glen and Jannelle left this afternoon to stop at their time-share in Las Vegas for a bit before heading back to their home in Colorado. It was really great to have them here (thanks for all the help!). Now that they're gone, I'll need to lean on the nurses more to get breaks. They're really good here, and Krista's doing so much better, that this shouldn't be a problem.

The bigger problem is the week after next. I have a week-long training event I should really be at in Santa Barbara starting November 18. If Krista does well and gets discharged then she will be staying in "The Village" apartments during this time - and while she's there she needs someone with her all the time. Also, we would like to bring the boys down during Thanksgiving break, but they would not be allowed to stay with her in the Village. I was planning on getting a hotel, but couldn't stay there and have Krista in the Village. These are complicated problems that I don't see any obvious solutions to, so please join me in praying for scheduling wisdom the next couple of weeks.

And God is able to bless you abundantly, so that in all things at all times, having all that you need, you will abound in every good work.
(2 Corinthians 9:8)

Day 19: It Worked!

Great news today... Krista's white blood count jumped way up to 1.0! That's an incredible jump (yesterday it was 0.2). The importance of this is that it means that the transplant was successful and that the stem-cells have engrafted, setting up a new blood factory in Krista's bone marrow. This begins a whole new phase of her treatment.

In the short term, she's going to be having bone pain associated with the startup of the new blood factory. Krista has been having intense lower back pain today, which may be related to that. She also may have some muscle strain from an awkward reaction to putting pressure on a bruise on her shin as she was getting into bed last night. (She's got a lot of bruising from having low platelets, but the shin one was from bumping into some furniture the other day -- quite a painful welt!) There's not much relief for the back pain, though they've added muscle relaxers and that seems to take the edge off. Also, she's getting platelet transfusions now at 30k (instead of 20k) because of her bruising. She was at 27k tonight and just got another transfusion.

Krista's been having less trouble swallowing now, so they are slowly transitioning some of her IV medicines back to pill form. That's an important step to getting released, since you can't bring an IV home with you. Release can't happen until her white count goes up to the normal range (I think that's between 4.0 and 6.0), but that is not likely to happen for another week or two. Once they release her, we will go to the on-campus apartments called "The Village" where we'll stay for 3-4 weeks for daily observation as they try to manage the inevitable Graft-Versus-Host Disease (GVHD). They're now starting to look for signs of GVHD in Krista.

It was great to have Jannelle and Glenn here again, so I could take an extended break and do some errands like shopping, laundry and showering. I missed the majority of the music therapy session Krista got today, involving playing buffalo drums, deep resonating hand drums, like a large tamborine without chimes. The exercise reduced Krista's blood pressure more than the medicines have been able to. Krista asked me if there was a verse about music being good for health, but I couldn't find anything specific. Actually, most of the verses I found referring to music fall into two camps: worship and warfare. I like to apply the warfare aspects to health concerns, since it is a battle with life and death on the line. This one feels appropriate for today, especially the part about singing in bed.

Praise the Lord.
Sing to the Lord a new song,
His praise in the assembly of His faithful people.
Let Israel rejoice in their Maker;
let the people of Zion be glad in their King.
Let them praise His name with dancing
and make music to Him with timbrel and harp.
For the Lord takes delight in His people;
He crowns the humble with victory.
Let His faithful people rejoice in this honor
and sing for joy on their beds.
(Psalm 149:1-5)