Day 12: Better Sleep

It looks like the sleeping aid helped Krista last night. There were just as many interruptions, but they didn't disturb her as much as they had previously. She didn't get a migraine today. Thank you, Jesus, for small mercies!

It was actually a strangely nice morning in  a way. Last night when I ordered dinner for Krista, she asked if I would put in a breakfast order also. So, just after the nurses did their 8 am vitals check and an endocrinologist followed up on a small calcium deficiency they wanted to adjust, breakfast showed up and we were able to share some time together before I had to leave. 

I drove home to Santa Barbara to take care of some errands and to pick the boys up for a visit with Mom in the hospital. It took longer than I had hoped to get back on the road, so we didn't get to visit until 8 pm. Trevor played backgammon with Krista while I read a story Adam has been working on. The visit was a little taxing on poor Krista who isn't capable of handling the energy of our youngest right now -- she had been sleeping most of the day again. We'll try a visit again in tomorrow when Trevor's a little more calm. 

My mother, Jan, is planning on stopping by to take the kids back to Santa Barbara. It will be good to see her briefly. Glenn and Jannelle will be heading down to the hospital after Jan arrives in SB. So we'll get to see more of them too. 

But You, O Lord, are a shield about me, 

My glory, and the One who lifts my head. 

I was crying to the Lord with my voice,

And He answered me from His holy mountain. Selah. 

I lay down and slept;

I awoke, for the Lord sustains me. 

(Psalm 3:3-5)

Day 11: Need Sleep

It was another night of poor sleep for Krista. Various nurses, assistants, and cleaning people regularly interrupt the quiet night. And once again, Krista spent the morning battling a migraine. She is suspecting that the interrupted sleep and the migraines are related. The oncologist said that she already had a standing order for sleeping medicine, so tonight she's going to try that to see if that helps.

Krista didn't do as well this afternoon as she had done yesterday afternoon. She mostly slept, but had some periods of alertness. At one point she asked me to help her find her glasses. I looked around and couldn't find them until I looked at her face... there they were! Her eyes are starting to go blurry even with the glasses on so it seemed like she didn't have them on. This evening the nurse explained that this can be a side effect of the medicine's she's getting. It should be reversible once those stop. It does seem like each time she gets these heavy treatments, she has to go in for an eye exam anyway to adjust the prescription.

We're planning on having the boys visit Krista this weekend. I just reserved a hotel room, one of the last in the whole area. I called around and everyone is booked because of the last horse races of the season at the Santa Anita horse track just a few miles away from the City of Hope. The attendant at Americas Best Value Inn & Suites was very kind and gave me a discount even though there were no discounted rooms available just because we're being treated at the City of Hope.

My mother has been caring for my father who had surgery earlier in the week. Apparently he is doing pretty good -- good enough to drive himself to Costco today! Mom thinks he should be able to take care of himself by Sunday, so she's planning on driving up to Santa Barbara then to stay with the boys a while. She'll drop by the hospital on her way and drive the kids back. Glenn and Jannelle are planning on staying a little while near the hospital before they head back to Colorado. They've been a huge help taking care of the boys for two weeks. Thanks Glenn and Jannelle!

A few people have asked if they can send cards to Krista in the hospital.Yes! (But please do not send flowers or uncooked foods as they won't even be allowed on the floor. They are very restrictive here.) The address is:

Krista English
City of Hope Helford Clinical Research Hospital
BMT Room 6135
1500 East Duarte Road
Duarte, CA 91010

I heard a song earlier today based on Psalm 46 that always speaks to me. (I couldn't find any legitimate links to audio or video of it.) I will end with that today.

God is our refuge and strength,
an ever-present help in trouble.
Therefore we will not fear, though the earth give way
and the mountains fall into the heart of the sea,
though its waters roar and foam
and the mountains quake with their surging
(Psalm 46:1-3)

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)

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)

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)

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)

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)