Thursday, October 31, 2013

Day 10: Sufficient Grace

Last night was really rough.  Krista went to bed feeling achy all over -- probably a reaction to the transfusion -- and then developed a migraine.  The medicine pumps were beeping though the night and she didn't sleep much even though she was really groggy.  I slept through the night ok, but it's sort of like long-term camping -- not all that comfortable.

John Piper reminded me in my devotional reading this morning that God has purposes for suffering that He doesn't relieve. Before I left to take a shower, I prayed over Krista that she would experience God's grace as sufficient for her today.

While I was gone, the oncologist visited and made some good changes. The pain medicine delivery was adjusted to provide a constant low-dose supply, with extra being delivered when Krista presses the button. It turned out that the button pressing was too complicated for Krista to track. Later in the day her nurse reprogrammed the PCA to show a light on the button when it was ok to press the button. That really helped her to know how to work it. She's been so groggy that it's hard for her to keep track of most anything. She turned away the physical therapist and the recreational therapist because she just couldn't keep her eyes open.

Around 2 pm, something changed.  She started to be more alert and wanted to eat a meatball sandwich. Later we took a walk around the building and played some backgammon.  She still needs to take frequent naps, but it seems much different than the last 24 hours. 

It's likely going to be a couple of weeks before the new immune system starts to show itself.  We're expecting her blood counts to be dropping during that time.  So far they're low but she hasn't required any transfusions yet.  

I think that God really answered my prayer this morning. Thank you all for your prayers as well.  May He continue to get the glory in how we suffer together!
But he [Jesus] said to me [Paul], “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.
(2 Corinthians 12:9)

Wednesday, October 30, 2013

Day 9: D0 Happy Birthday!

Today was the big transplant day, D0 (D-zero) as they wrote on her whiteboard, which means that Krista gets to celebrate a whole new birthday, again. She happens to share this birthday with our youngest son, Trevor, who is 12 today.  Happy birthday, Trevor! Sorry we couldn't be there to celebrate with you.  Mammaw and Pappaw got him a cake and sang Happy Birthday with us on Skype, so we sort of felt like we were there.

Krista had a marginally better day today. At least there were no tears because of the pain. But she was frustrated with how groggy she was feeling. It's actually a bit difficult to explain why she was so groggy since the actual amount of pain killers she was getting was less than on previous days. Since she was in control of the pain killers, she hasn't been using it as much as she is allowed. Her blood counts are pretty low though, and that can make her weak. Just not usually uncontrollably sleepy. She would fall asleep sitting up!

Maybe it was because of the anti-nausea meds she has been taking? There was a lot of the wrong kind of color today; lots of throwing up, that is. But that was probably due to Krista being so constipated. She success moving it out twice today, thanks to the addition of prune juice to her lunch and dinner. Still, it feels like something's not moving higher up. Once that gets cleared out I think she'll feel a lot better.

The stem cells arrived right on time and her nurse, Richard, was excited because he was going to be able to administer it before his shift ended at 7 pm.  Here's some pictures of how it happened...

Prepping the patient...
Krista giving her best smile for how awful she feels...

Richard hanging the bag of stem cells...

Here's what the stem cells look like up closer...

Stem cells starting to go in...
The last of the stem cells flushing out...
It is amazing how different this transplant was than the first one. There was no parade of doctors, nurses, and med students; just the nurse. The bag of stem cells was larger and filled with fresh cells, not frozen. The nurse said that this has something to do with the defrosting process -- it's easier to defrost a smaller amount. The cells had no preservatives, where frozen cells require preservatives. That is why she needed the lollipop last time -- to counter the reaction to the preservatives. Last time, she was wide awake and alert; this time she was drowsy and even fell asleep after it was over. Last time, the reaction she had caused her nose to fill up with water and she had to pee only after being flushed out with a strong diuretic to keep her from drowning in her own water; this time she had to pee repeatedly in the middle of the transplant because she felt like something was pushing on her bladder (probably related to the constipation). So far so good!

Now, we'll have to wait and see how the new cells get along with her body. A 10 out of 10 match makes for good changes of success, but there are so many variables it's impossible to tell until it happens. It's ultimately up to the Lord to make it happen. Lord, bring healing to your precious daughter Krista!
May the Lord grant all your requests.
Now this I know:
The Lord gives victory to his anointed.
He answers him from his heavenly sanctuary
with the victorious power of his right hand.
Some trust in chariots and some in horses,
but we trust in the name of the Lord our God.
They are brought to their knees and fall,
but we rise up and stand firm.
Lord, give victory to the king!
Answer us when we call!
(Psalm 20:5b-9)

Tuesday, October 29, 2013

Day 8: Crazy Day

Today was the craziest day. It started last night with Krista not sleeping well partially due to another headache. They managed the pain better, but she got pretty groggy and may have said some things incoherently that were misinterpreted. Krista's goal has been consistent with the pain management specialist's goal -- to keep the pain under control before it gets out of control. Somehow the nurses interpreted things she said while waking up and wanting to go back to sleep as that she just wanted to be knocked out with drugs. Not! We cleared that all up this afternoon. The pain specialist came by again today and put her on a PCA (Patient-Controlled Analgesia) to cut out the middleman. That's the machine where she pushes a button and gets a small dose of pain meds. So far it's working well for the pain management.

Back to the craziness... This morning when I came back from my morning meetings, Krista was in tears. She was having incredible pain in her sternum area, radiating outwards. She described it like a horrible sunburn, both inside and out. The nurses have to respond to things like this to find out first if it is a heart attack. They took blood, x-rays, and EKG readings and all of them were conclusive that it was not a heart attack. Phew! But what could cause such a strange symptom? It could have been either of two causes: mucusitis or constipation. She was having problems with the dry mouth yesterday, so it could have been mucusitis, but she also hadn't defecated for three days. After she discovered that it got worse when standing, and that she felt a little better after vomiting everyone was in agreement that is wasn't mucusitis.

Normally they would treat constipation with all sorts of laxitives, stool softeners, etc. But the particular chemo that Krista received Saturday is notorious for causing diarrhea -- the most common symptom on the floor according to her nurse today. So the trick is to give her just enough to get her going again, but not too much to go to the other extreme. There was some progress made in the afternoon, so hopefully this will resolve itself soon.

Tomorrow is transplant day. Today, a kind young German man gave up some of his stem cells, which were packed up and shipped off to the United States overnight. The best they can tell me is that the donor's shipment is expected to arrive around 4 p.m tomorrow (Wednesday). After that it has to be counted to extract the right number of cells for her body weight and a few other things. They don't expect to do the actual transplant until the evening. It all feels a bit unreal.

Oh, another crazy thing happened too. I had to do some laundry today, since I only have 3-4 days worth of clothes with me.  They have a great facility for caretakers here, complete with showers, kitchen, tables, bookshelves full of books and movies, and washers and driers. I put my wash on and sat down to eat dinner and a woman came in and said, "Is your last name English?" I was shocked because I didn't recognize her. She turns out to be from Santa Barbara, and had recognized me from my picture in the newspaper from one of our fundraisers. She has been down here over a month dealing with her husband's relapse of MDS after a transplant.  (MDS is another blood cancer; the same one that Robyn Roberts from ABC-TV got a stem cell transplant for.)  They are trying to get it into remission with chemo.  Please pray for Jeff and Kathy as they continue to travel this difficult road.  I'll end with the psalm that Jews used to recite as they traveled the road to Jerusalem for Passover to remind us to look to God to keep us all safe on our journeys.

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

Monday, October 28, 2013

Day 7: Nothing About This Is Fun

Since it was Monday, the hospital got back up to running at its normal active level. That means lots of visits from doctors.

The physical therapist visited and went through a series of exercises. They walked a couple of laps and did chair exercises. The goal is to keep her moving now while she can. From here out, she's going to feel progressively worse as her blood counts drop, and when she feels bad she's not going to want to move around much.

The occupational therapist visited also and went through some exercises she can do in bed.

Her pain specialist came by to see how things were going. There was a bit of a miscommunication with the directions given to the nurses, so they have been a bit reluctant to give her what she needs to keep on top of the pain. The doctor cleared that up and the pain meds have been much more effective tonight.

Her oncologist stopped by also. Krista has swollen glands in her neck that he wanted to look at. He suspected that she had blocked salivary glands since it was in combination with her having difficulty swallowing food because of a dry mouth. He recommended sucking on a lemon to stimulate the salivary glands. She did this at dinner, but didn't feel any difference. 

Krista's kidney labs are still a bit off, so they continue to put extra water into her through the IV. This is making her use the restroom quite frequently, which is actually a good thing. She's feeling better today than yesterday, but was annoyed enough with it all that she said, "Nothing about this is fun," pointing at her IV pole she always has attached.

Thanks to Terry for bringing a meal to the kids and grandparents tonight. It's a relief to know that things are being taken care of back home while I help Krista through all this. We keep trusting that God's going to provide a way through it all.
No temptation has overtaken you except what is common to mankind. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can endure it. (1 Corinthians 10:13)

Sunday, October 27, 2013

Day 6: Pressure Changes

I forgot to mention last night that Krista was having unusually low blood pressure. I didn't sleep well because I wanted to make sure she didn't fall when she got up to use the restroom. She didn't have any problems with dizziness fortunately, and today her pressure stabilized. The endocrinologist has been making daily visits, and today he seemed confused about the blood pressure. He had reduced her hydrocortizone yesterday because he says that her adrenal glands are producing again. The amount that he reduced yesterday was very minimal and should not have had any effect. He ordered it to go back up today, just to be safe. I don't know if it had anything to do with it, but her blood pressure seems to be doing better. Very strange.

Most of the day Krista slept. The nurses started her on some new medicines that are anti-rejection drugs. One of the side effects is stomach pain, which they treat with pain killers, which require anti-nausea drugs. All that makes one quite drowsy.  

I finally got the kids ride schedule worked out for this week.  It was a little complicated because of conflicts and last minute changes like a soccer game getting cancelled. We are so thankful that we have enough help to fill all the schedule gaps.  Thanks Terry, Nancy, Nora, and Bonnie! It's great to have the freedom to stay here with Krista since she's been having complications.  It's not that long until the transplant, which is coming up Wednesday.  
Hear my cry, O God;
listen to my prayer.From the ends of the earth I call to you,
I call as my heart grows faint;
lead me to the rock that is higher than I.
For you have been my refuge,
a strong tower against the foe.
(Psalm 61:1-3)

Day 5: Go! Fight! Win!

Saturday was going to be a big day, and I was hoping to wake up early enough to miss traffic and make it to the hospital with enough time to decorate before the last dose of chemo. My cell phone has an alarm but I didn't realize that it was in silent mode when I went to bed last night. The alarm went off, but I didn't hear it and woke up later than I wanted. I suppose that I needed the rest. Fortunately, the traffic was pretty good (only one 2-mile stretch of stop-and-go).

The boys and I spray-painted some pine cones last night to make them compatible with the hospital environment. The plan was to hang them between a drum-cymbol stand and a IV drip with fishing wire. Plus, they had picked out some football-themed party supplies to decorate the room. I brought all that stuff up to the room, but quickly had to remove the pine cones. The paint had an odor because it was too fresh. You can see the rest of the decorations in the pictures posted here. It's not much, but adds a little fun to an otherwise unpleasant environment.

The last dose was a bit late, so I was done decorating with plenty of time to spare. I went downstairs to grab a sandwich and got a text from Krista that they started the premeds already. 

The chemo only took about 20 minutes to go in, but Krista was required to ice her mouth for a full hour to prevent mouth sores. She was diligent to chew ice the whole time. It doesn't seem like much, but if you can imagine the "brain freeze" you get from drinking a smoothie you can appreciate the feat a little bit better. Her mouth was frozen most of the time, yet she kept going. At one point, she encouraged herself looking at the decorations, saying "Go! Fight! Win!" The nurse helped her through the tedium the last 10 minutes by giving her a Popsicle they found in their refrigerator. She had blue lips from the food dye in the Popsicle, but no mouth sores.

She napped a bit in the afternoon, and needed pain and anti-nausea meds at various times. But for a window she felt good enough to get in a few games of backgammon with me.

So far it's looking pretty good, even though it doesn't feel so good for her. Blood counts are on the low side but stable. They will be dropping before the transplant since the chemo is still working in her body even though no new chemo is being introduced.

It was a good battle today, and we thank the Lord for the training he's put us through that has helped us to endure it. What might he be training you for? Go! Fight! Win!
Do you not know that in a race all the runners run, but only one gets the prize? Run in such a way as to get the prize. Everyone who competes in the games goes into strict training. They do it to get a crown that will not last, but we do it to get a crown that will last forever. Therefore I do not run like someone running aimlessly; I do not fight like a boxer beating the air. No, I strike a blow to my body and make it my slave so that after I have preached to others, I myself will not be disqualified for the prize.
(1 Corinthians 9:24-27)

Friday, October 25, 2013

Day 4: Moving On Up

Krista got to move up to the 6th floor today. The new room isn't that different than the old one. Roughly the same size, roughly the same view. No migraines today, and her kidney function is getting better. Thank you Jesus!

I'm heading down to City of Hope early in the morning. Now that she's in the new room I can put up the decorations the kids and I picked out for her: some football themed party supplies and shellacked pine cones we brought back from Big Bear. Just a few things to bring color and some of the outside world into her room.

The last dose of chemo will start tomorrow around 11 am. The medicine they use for that dose is different than the others -- this one will be much stronger. The nurses have been prepping Krista for an unpleasant experience. The dose will take about 1/2 hour, but they say that she will have to suck on ice chips for a full hour. This medicine causes swelling in the mouth capillaries and the ice chips help counter that effect. But it's not going to be easy. That's another reason for me to go down. Please pray that it all goes well.

This new kind of chemo is going to do the job of killing off the bone marrow in preparation for the transplant on Wednesday. There's not going to be any radiation this time, because the oncologist believes it isn't fully necessary or safe for Krista after all she's been through.

Thanks to Regina for bringing dinner tonight. And thanks to everyone who helped with rides for the kids this week. I'm working on rides for next week, and so far it's looking good. Glenn and Jannelle are staying with the kids at home again this week. That's great because it allows me to be more flexible in case I need to extend my stay with Krista. We'll see how it goes and how long I may be needed down there. It's interesting that Jesus answered the disciple's fears with a discussion of rooms in heaven. I'm going to settle my heart today with this thought:
[Jesus speaking] "Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you?"(John 14:1-2)

Thursday, October 24, 2013

Day 3: Start the rollercoaster

The roller coaster has started up again.  Krista told me this morning that the blood tests this morning have shown some inbalance in kidney function.  The doctors suspect that this is because of the antiviral and antibiotics she is taking, so they are changing those and possibly even reducing the amount of chemo she's getting.  On top of that she got another migraine.  Fortunately, they were able to alleviate the migraine by the end of the day.  She sounded better when I talked with her tonight, though a bit tired.  Still, she has to stay up til 10:30 when they'll start the fourth dose of chemo.  Hopefully tomorrow her blood tests will show some improvement.

Krista also said that they were going to change her room up to the 6th floor today, but something happened and they changed their minds.  I'm planning on going back down Saturday, without the boys, and hoping that she'll be in the new room by then so I can start to decorate it.  The rooms are very bland! The one bright point in the room right now is a beautiful quilt that one of the moms from our Boy Scout troop made for Krista on behalf of Troop 1.  Thanks so much Mary!

Trevor stayed home from school today due to a sore throat and a stuffy nose.  He's doing better now, with just a residual stuffy nose.  He thinks he'll be able to go to school tomorrow.
I love you, Lord, my strength.
The Lord is my rock, my fortress and my deliverer;
my God is my rock, in whom I take refuge,
my shield and the horn of my salvation, my stronghold.
(Psalm 18:1-2)

Wednesday, October 23, 2013

Day 2: Feeling Better

Today was a better day for Krista. Her migraine went away and they managed to get the grogginess under control better. She was feeling good enough today that I actually did go home. I wouldn't do this normally, but the care she's getting has been excellent and that makes it easier to trust her into their hands.

Krista tells me that it has been a very nice experience being at the City of Hope. The staff seem to really care, and treat her like a person rather than a number. Today, without any prompting, they sent first a physical therapist and then an occupational therapist to determine her physical capabilities and provide exercises she can do while getting treatment. She has seen physical therapists previously that weren't that helpful, but this one was excellent -- asking the right questions and offering the right kind of help. She also got to meet with the pain management specialist who has been helpful in identifying ways of helping her with the unusual pains she has been experiencing. The theory is that her body has saturated the pain threshold so that it doesn't take much to set her into strange whole-body pains. The pain management specialist has her taking a medicine that should bring that threshold down. So far it seems to be helping, though they're still trying to get the dosing right.

It's good to see the family again. The boys are doing good, and Glenn and Jannelle are doing great taking care of them. Thanks to Alyssa for dinner tonight. Pray for Trevor who just came down with a small sore throat. We were hoping to take the boys to visit Krista this weekend, but if he gets sick that won't be possible. Plus, if I get sick, I won't be able to go back to stay with Krista when she needs me. Also, please pray for my father who will be getting his abdominal aortic aneurysm repaired Tuesday. It's not supposed to be too risky, but it is in a dangerous area. My mother was going to visit us next week, but will need to take care of Dad for a bit. Glenn and Jannelle have agreed to stay longer, so we've got the kids covered. It's just a change of plan and we trust that God is working even in the things we didn't count on.
Many are the plans in a person’s heart, but it is the Lord’s purpose that prevails. (Proverbs 19:21)

Tuesday, October 22, 2013

Day 1: Go Home?

Krista checked in to the City Of Hope late yesterday.  Monday is a busy day here, so there was a lot of waiting for appointments, followed by waiting for a room to open.  There were no rooms in the allogenic transplant (6th) floor of the new building, and there was a chance that we might have had to stay in the old building.  The Lord answered our prayer and made it possible to be in the new building in a floor very like the allogenic translant floor -- it's on the autologous transplant (5th) floor!  Why do they have separate floors for the two types?  I don't know, but there must be enough of each to demand it.  They do a lot of stem cell transplants here.  They will move her upstairs sometime before the transplant, but we don't know exactly when that will be.

The day was emotional for Krista, as she was actually feeling good and didn't want to give up her freedom.  Who wants to start a painful treatment when you're feeling good.  Plus, she didn't like that I was joining her in her medical prison so she told me that she was doing fine and I should go home.  If all went well the next day, I agreed that I would.

But I'm still here!  After a late evening dose of chemo, Krista didn't sleep well.  When I got up to do a early morning phone meeting for work, she looked like she was doing OK with the lack of sleep, but a couple of hours later when I got back she was in severe migraine pain.  It stuck with her all day, even though they gave her some strong pain meds, causing lots of grogginess.  There's another chemo dose happening right now, so we'll see how she does with it tonight.  Maybe tomorrow will be different.

The boys are at home with their grandparents, Glenn and Jannelle.  It was really nice that they could come out from Colorado for a while to stay with them.  They've had a lot of help also with getting the kids to and from school (thanks Nancy, Nora, and Bonnie!) and meals (thanks Melanie and Julie).  It's been a while since I wrote last, so I also need to thank Jessika, Marta, Willow, Jill, Betsy, Alyssa, Jill, Elaine, Mia, Jacqueline, April, Marsi, and Susan for the meals you brought.  All of you are so awesome and we're so grateful for the help!

I think we're all in need of some good rest, and I can't think of any better way to get it than to seek it in Christ.  Lord, take this hardship and turn it for Your Glory.

[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)