Day 17: Side Effects

I'm tired tonight from a long day so this post will be short. Krista is continuing to do well. She got a red blood transfusion this morning. Last night she couldn't sleep because of an extra steroid dose they gave her late on the day.  We spent an interesting time together around 3:30 am as she was enjoying the good feelings of some of the side effects of the meds she's on. It's not uncommon for transplant patients to have hallucinations, and Krista was seeing and hearing some that appear to be making her feel better. If her kidney and liver functions weren't doing as well as they are I would be worried. But as this is one of the few pleasures she's had in a while as long as the doctors aren't worried, I'm ok with it. 

Jannelle is staying the night with Krista tonight so I could go back to Santa Barbara to see Trevor's choir concert. It was fun to see them all singing broadway songs. I'll head back down tomorrow. 

The afflicted also will increase their gladness in the Lord,

And the needy of mankind will rejoice in the Holy One of Israel. 

(Isaiah 29:19)

Day 16: Continued Improvements

Krista is doing so much better today. There were no vomiting incidents at all, and her liver and kidney function is still stable and normal. Her platelet level was low, so she got a transfusion early this morning. We noticed some bruising which is typical of low platelets. That just takes some time to heal.

That reminds me that the City of Hope blood bank called me the other day asking if we knew anyone who would like to donate. They do things a bit different than UCLA and Santa Barbara in that blood products can be donated specifically for a patient at no cost. If you find yourself near Duarte, CA and have any extra blood, it could be really helpful -- either for Krista or for other patients here, too. (They have so many stem-cell transfusions here that they split the floors between specific ways of doing the transplant -- and the rooms are almost always full!) Krista can use platelet donations from any blood type, and if you have O-negative she can use whole blood also. If you are interested, call (626)471-7171 and ask for Jenifer, mentioning donating for Krista English. The donation center is open on the following days:

• Mon, Tue 9:30 am - 6:30pm
• Wed 8:00 am - 5:00 pm
• Thurs-Sat 7:00 am - 4:00 pm
• 2nd Sun of month (Nov 10th, this month) 7 am-4 pm

Krista's hair is starting to fall out. It was looking like she might keep it, but the clumps that are dropping probably indicate that it's not going to stay for long. They have a really good beauty/image group here, but so far Krista hasn't wanted to have them cut it off. She got a nice shorter haircut before starting the treatment, so it's not getting tangled at least.

Glenn and Jannelle were here again today. Krista had spilled some things on her blankets and I had some other laundry to do, so it was great to be able to leave for a couple of hours to take that and get some lunch. My mother, Jan, is with the kids in Santa Barbara and she's doing a great job with all the craziness of the boys schedules. Not only is it soccer finals this week, but Trevor also has a choir performance. The schedule I put together was going to be too much for Trevor, so they all figured out that it would be better for him to miss the last game of the season so that he can make the performance on time and with enough energy. I wish I could be there for it tomorrow! Hopefully someone will record a video of it for us.

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 be with us, Lord,
even as we put our hope in you.
(Psalm 33:20-22)

Day 15: Adrenal Correction

Today started out just like the past few days with nausea and vomiting, weakness and drowsiness. Krista and I talked about her difficulties, and the one thing she didn't complain about was pain. That seemed strange to me so I mentioned it. Maybe she was getting too much pain killer and it was the pain killer that was making her throw up? We agreed to talk to the pain specialist about it.

When the next doctor in a lab coat came in, we both thought she was from pain specialty. We explained about the symptoms and how we suspected too much pain killer, but it turned out that she was really an endocrinologist! Krista's adrenal function has been low, and this has always been associated with stomach problems. She thought Krista could use more hydocortizone and that should help with her stomach problems.

We eventually saw the pain specialist and had the pain killer reduced (it wasn't all that high anyway).

Glenn and Jannelle spent the day in the room with us. This was great for me to get some work done on my laptop, but it sure wasn't the most exciting time for them. Krista still slept a lot. (The transplant wipes everyone out, even without adrenal fatigue.) Still it was good to have them here so we could take bathroom shifts.

This afternoon was quite different. Krista started being more alert and more capable of getting up on her own. Then she asked for a popsicle! She hasn't been able to keep sips of water down, so this was huge. We ordered a popsicle and an italian ice. She ate them both and they both stayed down. Amazing! Later she ordered dinner: chicken broth, a popsicle, an italian ice, and apple sauce. Again she ate it all (except for the chicken broth that didn't taste good to her). No more vomitting since the morning. Thank you Jesus!

I remember my affliction and my wandering,
the bitterness and the gall.
I well remember them,
and my soul is downcast within me.
Yet this I call to mind
and therefore I have hope:
Because of the Lord’s great love we are not consumed,
for his compassions never fail.
They are new every morning;
great is your faithfulness.
I say to myself, “The Lord is my portion;
therefore I will wait for him.”
The Lord is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly
for the salvation of the Lord.
(Lamentations 3:19-26)

Day 14: Small Improvement

Today was a lot like yesterday in regards to symptoms, and Krista is wondering how much more she can take. There's just no stopping this nausea and vomiting. The good thing is that her liver and kidney are functioning well. She did need platelets this morning, but that and the other blood labs are about as expected at this point. 

The oncologist made a few changes to the medicines today. The amount of anti-rejection drug was reduced because it is known to cause blurry vision and headaches when there's too much. They've already just about maxed her out on the kinds of anti-nausea they can give her. She's getting 5 different kinds of anti-nausea, including a patch for sea-sickness! The nurse said there's nothing more they can give her to help with that, but the oncologist made an order for medical marijuana as a last resort. It's in a pill form, and she's been having problems swallowing lately. After taking the first dose, she threw up about a minute later. There was no sign of the pill, though, so they think she kept it down. And for the first time, she said that she noticed a little less nausea after that. It definitely didn't cure the queasiness, but it did help at least.

Krista's mother Jannelle, spent the later half of the day in the room with Krista and I, so she got to experience first-hand how Krista's doing. Starting today, Krista has to have someone with her when she uses the restroom, because she's quite wobbly and often can't open her eyes very well. When Jannelle's not here and I have to step out, the nurses put an alarm on the bed so they can know when to help. I don't think that would be fast enough most of the time, so I'm trying to stay in the room as much as possible. With Jannelle's help, though I was able to go out to get some dinner which was a nice break. Thanks Jannelle!

I cry aloud to the Lord;
I lift up my voice to the Lord for mercy.
I pour out before him my complaint;
before him I tell my trouble.
When my spirit grows faint within me,
it is you who watch over my way.
(Psalm 142:1-3a)

Day 13: The Worst Day

It is hard to express how things changed today -- partly because I wasn't there for much of it, but mostly for the intensity of the shift.  Krista spent most of the day today nauseous and vomiting. I tried to contact her all morning but she did not answer.  Now I know why.  When I arrived, she was asleep and barely responded when I told her the kids and my mother were here. She was just so wiped out from the morning that she couldn't respond or open her eyes.  The nurse said that they had been trying to help her with anti-nausea, but even though she hadn't eaten all day she still threw up a lot.  The kids didn't get much of a visit today, just enough to say bye. Trevor was disappointed because he had his magic tricks all ready to show her. (Yesterday he left them in the car.) After they left, Krista wanted me to sit with her while she threw up. Nothing seems to bring relief though. She said, "This is the worst day." Praying for a better tomorrow...

Be merciful to me, Lord, for I am in distress;
my eyes grow weak with sorrow,
my soul and body with grief.
My life is consumed by anguish
and my years by groaning;
my strength fails because of my affliction,
and my bones grow weak.
(Psalm 31:9-10)

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)