The bottom of the valley has been reached, and though we are still in the thick of the battle, we are reminded of the reason for our hope: God is for us.
Last night, we think that God did a little miracle for Krista.
The day started off with notice that her platelet count was dangerously low at 3,000. There was blood in her urine, and she was having pains in her bladder and kidney areas. We learned later that this is very normal for a low platelet condition, but there is always concern that there may be problems with kidney function. The blood-work didn't show any signs of kidney problems, and at some point in the evening, the blood faded in the urine.
To deal with the low platelet problem, the doctors wanted to get HLA-matched platelets. Unfortunately, they weren't available -- and wouldn't be available until Thursday at the earliest. Since the counts were so low, the doctors went ahead and transfused some unmatched platelets. Krista's body fought against those, via a mild fever near 38 C (100.4 F), and her count dropped to 2,000.
She slept most of the day, fever up and down, pain up and down. Another bag of unmatched platelets arrived in the evening, and they gave them to her even though her temperature was high, above 38 C (100.4 F). After the transfusion, the fever went way up -- to 40 C (104 F) -- and stayed around there most of the night. We applied ice packs to bring it down, but it wouldn't budge. She was finally allowed to take some Tylenol around 3 a.m., and then the fever broke.
Early this morning, Krista said to me, "My [platelet] counts are probably zero." I had to agree. All that fever should have wiped them out. The labs came back a short time later. We were shocked to learn that they had actually gone up to 7,000! So, it looks like there may have been a small miracle taken place here. For those of you who were praying with us... thank you, and praise God for the encouraging sign!
Even with this divine intervention, though, the platelet wars are not over yet. A platelet count below 10,000 is considered dangerously low, so there are more transfusions to come. We were hoping that the platelets would be in today, but just got word that they may not be available and she may need to get more unmatched platelets. Keep on praying! Don't let the gory details get you down either; the doctors expect to see most of it and are very encouraged with the progress.
We'll try to keep you up-to-date on what to pray for, but in between updates let God show you what to pray for. He knows best anyway!
In the same way the Spirit also helps our weakness; for we do not know how to pray as we should, but the Spirit Himself intercedes for us with groanings too deep for words;
and He who searches the hearts knows what the mind of the Spirit is, because He intercedes for the saints according to the will of God.
And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.
(Romans 8:26-28)
Hope Notes from Krista and Mike is a journal of encouragement as this Christian mom, and supportive husband and caregiver, face the ups and downs of a stem cell transplant after recurring leukemia. Start at the beginning by clicking September 2008 in the archives and reading forward. It's not always pretty, but it's real. We pray you will be blessed by these passages in some way.
Thursday, February 5, 2009
Tuesday, February 3, 2009
In The Bosom Of A Bad Buffet
It was very nice of my mother to come up from Carlsbad to give me some breaks today. Thanks Mom! It really helped us deal with the many flavors of pain and suffering today; the last two days being a complete smorgasbord.
On one table of our smorgasbord, there was emotional distress brought on by two different members of the hospital staff. One member brought distress through hygienic carelessness, the other through wretched interpersonal skills. I will not go into details on these, but please pray for the staff here. All the rooms in the transplant wing are filled and it may be taking a toll on them; that in turn affects their ability to care for Krista. She has been very concerned about what has happened (and rightfully so), to the point of tears, but this shouldn't be her burden right now. She needs to feel safe and comfortable with the help staff so she can endure the unsafe and uncomfortable physical things she's going through.
On another table of this smorgasbord, there were physical challenges: low platelets, low red blood, fevers, chills, heavy inflammation, and generally feeling yucky. Her tongue was so swollen they ordered x-ray pictures to make sure that she would continue to be able to breathe. Fortunately, she hasn't had any blockage. We suspect that the swelling and inflammation are an abnormal build-up response to benedryl, and stopping it seems to have helped bring down most of the external, visible swelling, though she still isn't able to swallow food.
And the last table in the smorgasbord proved to be the most excruciating of all: agony. A drop in platelets today (to 12,000) came with some kind of bladder dysfunction. Her urine has blood in it, and she is experiencing aching in her bladder and in her lower back that earlier this evening she rated as a 9 out of 10 (with 10 being the worst pain possible). We were concerned that this may have been some kind of kidney failure, but the doctor tonight informed us that the blood tests show that her kidney is working properly. He also press-tested her back and identified the source of the pain in some muscles in her lower back. The pain was excruciating, but, thanks to a new morphine drip (that replaced the Dilaudid drip after some severe vomiting), the pain is much more tolerable and she has been able to get some sleep now. They are hoping that the platelet transfusion today will stop the bleeding in the bladder. It may have stopped already if the visible color is just residual blood getting flushed out. We'll learn more tomorrow.
It breaks my heart to see her go through all this. The doctors say that the two weeks following the stem-cell transfusion are the worst part of the process for the patient. That makes tomorrow a half-way point of sorts, and helps us see the light at the end of the tunnel.
Answer me when I call to you,
O my righteous God.
Give me relief from my distress;
be merciful to me and hear my prayer.
(Psalm 4:1)
On one table of our smorgasbord, there was emotional distress brought on by two different members of the hospital staff. One member brought distress through hygienic carelessness, the other through wretched interpersonal skills. I will not go into details on these, but please pray for the staff here. All the rooms in the transplant wing are filled and it may be taking a toll on them; that in turn affects their ability to care for Krista. She has been very concerned about what has happened (and rightfully so), to the point of tears, but this shouldn't be her burden right now. She needs to feel safe and comfortable with the help staff so she can endure the unsafe and uncomfortable physical things she's going through.
On another table of this smorgasbord, there were physical challenges: low platelets, low red blood, fevers, chills, heavy inflammation, and generally feeling yucky. Her tongue was so swollen they ordered x-ray pictures to make sure that she would continue to be able to breathe. Fortunately, she hasn't had any blockage. We suspect that the swelling and inflammation are an abnormal build-up response to benedryl, and stopping it seems to have helped bring down most of the external, visible swelling, though she still isn't able to swallow food.
And the last table in the smorgasbord proved to be the most excruciating of all: agony. A drop in platelets today (to 12,000) came with some kind of bladder dysfunction. Her urine has blood in it, and she is experiencing aching in her bladder and in her lower back that earlier this evening she rated as a 9 out of 10 (with 10 being the worst pain possible). We were concerned that this may have been some kind of kidney failure, but the doctor tonight informed us that the blood tests show that her kidney is working properly. He also press-tested her back and identified the source of the pain in some muscles in her lower back. The pain was excruciating, but, thanks to a new morphine drip (that replaced the Dilaudid drip after some severe vomiting), the pain is much more tolerable and she has been able to get some sleep now. They are hoping that the platelet transfusion today will stop the bleeding in the bladder. It may have stopped already if the visible color is just residual blood getting flushed out. We'll learn more tomorrow.
It breaks my heart to see her go through all this. The doctors say that the two weeks following the stem-cell transfusion are the worst part of the process for the patient. That makes tomorrow a half-way point of sorts, and helps us see the light at the end of the tunnel.
Answer me when I call to you,
O my righteous God.
Give me relief from my distress;
be merciful to me and hear my prayer.
(Psalm 4:1)
Sunday, February 1, 2009
Feed A Cold; Starve A Fever
It's really a strange thing to have someone else's immune system. Once the stem-cells graft into Krista's bone marrow, they will build a whole new immune system. Previous allergies, immunizations, and immune reactions will be history. In the past, Krista's body had often rejected un-matched platelet transfusions, indicating this by spiking a high fever. With the new immune system, she is likely to no longer have that problem.
So, is this a glimpse of things to come? The platelet transfusion she got yesterday has taken hold. Her platelet count went from 9,000 to 37,000 after the transfusion, and were at 30,000 this morning. If that were the end of the story, she would be doing really well.
The problem is that even with the platelets at a safer level, she has developed a fever. UCLA uses a metric thermometer, and anything 38 degrees Celsius (100.4 Fahrenheit) or higher is considered a fever. The nurse says that a fever is the only indication they get if the patient gets an infection. Infections are fairly common with transplant patients. Since Krista has virtually no white blood, the doctors have to target infections quickly or it can get dangerous. And, to top it off, a fever can also destroy platelets.
Last night Krista's temperature hit 38 degrees. The nurse became much more animated as she explained what it meant and what they needed to do. They ran lab tests on urine (in case of bladder infection), blood taken from her regular ports (for systemic infections), and blood taken directly from a different vein (to make sure that the port line itself isn't infected). They started her right away on a broad-spectrum antibiotic. When the fever continued to rise up to 38.4 C (101.1 F), they gave her Tylenol and had her put ice packs on her body. They've managed to keep the fever down around 38 C, but it's still there.
We should get lab results tomorrow, but in the meantime, they've adjusted the antibiotic and added a new anti-fungal based on some preliminary results. She's also going to be evaluated for a nutritional drip since she hasn't been able to eat much. If her tongue swells any more than it has, they are going to put her on steroids; but they don't want to do that unless necessary since that inhibits white blood production.
But the eyes of the LORD are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death
and keep them alive in famine.
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 rest upon us, O LORD,
even as we put our hope in you.
(Psalm 33:18-22)
So, is this a glimpse of things to come? The platelet transfusion she got yesterday has taken hold. Her platelet count went from 9,000 to 37,000 after the transfusion, and were at 30,000 this morning. If that were the end of the story, she would be doing really well.
The problem is that even with the platelets at a safer level, she has developed a fever. UCLA uses a metric thermometer, and anything 38 degrees Celsius (100.4 Fahrenheit) or higher is considered a fever. The nurse says that a fever is the only indication they get if the patient gets an infection. Infections are fairly common with transplant patients. Since Krista has virtually no white blood, the doctors have to target infections quickly or it can get dangerous. And, to top it off, a fever can also destroy platelets.
Last night Krista's temperature hit 38 degrees. The nurse became much more animated as she explained what it meant and what they needed to do. They ran lab tests on urine (in case of bladder infection), blood taken from her regular ports (for systemic infections), and blood taken directly from a different vein (to make sure that the port line itself isn't infected). They started her right away on a broad-spectrum antibiotic. When the fever continued to rise up to 38.4 C (101.1 F), they gave her Tylenol and had her put ice packs on her body. They've managed to keep the fever down around 38 C, but it's still there.
We should get lab results tomorrow, but in the meantime, they've adjusted the antibiotic and added a new anti-fungal based on some preliminary results. She's also going to be evaluated for a nutritional drip since she hasn't been able to eat much. If her tongue swells any more than it has, they are going to put her on steroids; but they don't want to do that unless necessary since that inhibits white blood production.
But the eyes of the LORD are on those who fear him,
on those whose hope is in his unfailing love,
to deliver them from death
and keep them alive in famine.
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 rest upon us, O LORD,
even as we put our hope in you.
(Psalm 33:18-22)
Saturday, January 31, 2009
Blood, Swelling, and Tears
The blood and platelet transfusions have begun. Krista's white blood count continues to come down (0.06 yesterday; 0.01 today). Her red blood count was down to 8 yesterday, so they gave her two pints of red blood. Today, the platelet count is down to 6000 (a "dangerous" level according to the nurse), so they are giving her non-typed platelets. This has been a gamble in the past, as her body has often rejected the platelets and ended up even lower. There is a possibility that with the wiping out of her marrow that the platelet sensitivity may be reduced. They are going to test her platelet level after the transfusion to see whether it worked or not.
Another challenge the doctors have always warned us about is mucositis. According to the wikipedia:
Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. Oral and gastrointestinal (GI) mucositis can affect up to 100% of patients undergoing high-dose chemotherapy and hematopoietic stem cell transplantation...
It's no surprise, then, that Krista has come down with full-blown mucositis. The related mouth and throat pain is the most difficult part for her. The inflammation is visible in her cheeks and the doctors need to keep it under control so it doesn't restrict her airway. They're adding benadryl to the mix to try to bring down the inflammation, and if that doesn't work they may try steroids. The benadryl makes her really groggy, and she's in and out of sleep -- sometimes in the middle of a conversation.
Please add stabilizing her blood levels and healing from mucositis to your prayers for Krista, as well as restoring her appetite. She hasn't eaten much in the past three days, between the nausea and being unable to chew. The nurse said she didn't think that adding an IV food drip would be a good idea because the vitamins in it can end up upsetting her stomach.
O LORD, I call to you; come quickly to me.
Hear my voice when I call to you.
May my prayer be set before you like incense;
may the lifting up of my hands be like the evening sacrifice.
Set a guard over my mouth, O LORD;
keep watch over the door of my lips.
(Psalm 141:1-3)
Another challenge the doctors have always warned us about is mucositis. According to the wikipedia:
Mucositis is the painful inflammation and ulceration of the mucous membranes lining the digestive tract, usually as an adverse effect of chemotherapy and radiotherapy treatment for cancer. Oral and gastrointestinal (GI) mucositis can affect up to 100% of patients undergoing high-dose chemotherapy and hematopoietic stem cell transplantation...
It's no surprise, then, that Krista has come down with full-blown mucositis. The related mouth and throat pain is the most difficult part for her. The inflammation is visible in her cheeks and the doctors need to keep it under control so it doesn't restrict her airway. They're adding benadryl to the mix to try to bring down the inflammation, and if that doesn't work they may try steroids. The benadryl makes her really groggy, and she's in and out of sleep -- sometimes in the middle of a conversation.
Please add stabilizing her blood levels and healing from mucositis to your prayers for Krista, as well as restoring her appetite. She hasn't eaten much in the past three days, between the nausea and being unable to chew. The nurse said she didn't think that adding an IV food drip would be a good idea because the vitamins in it can end up upsetting her stomach.
O LORD, I call to you; come quickly to me.
Hear my voice when I call to you.
May my prayer be set before you like incense;
may the lifting up of my hands be like the evening sacrifice.
Set a guard over my mouth, O LORD;
keep watch over the door of my lips.
(Psalm 141:1-3)
Thursday, January 29, 2009
The Truth Of The Matter
We were told that the actual stem-cell transfusion was going to be "anti-climactic", "no big deal", and "just like a normal blood transfusion". It sounded like there was going to be a small syringe, a single injection, and that would be it. What a different experience we had!
The first sign that this wasn't going to be easy came from the administering RN, who asked Krista if she had any hard candies. Hard candies? Why? People getting a stem-cell transfusion often have a tickling sensation in their throats. Krista asked if she could use M&Ms, but the RN said that she didn't want her to choke. She wanted me (Mike) to run downstairs to get some candy, but I didn't want to miss anything.
Fortunately, someone mentioned that they had some lollipops at the transplant desk. Look... it's heart-shaped -- Krista's favorite! That was a nice touch.
Once we got that settled, the RN proceeded to roll off some more possible immediate effects: fever, abdominal pains, coughing, and flu-like symptoms. This wasn't sounding very good.
The blood arrived in a red picnic cooler. I guess they had to put it in something, but I was expecting something a little more medical looking. The transplant coordinator had previously gone into great detail about how it was stored at -197 degrees in a 3-foot cube refrigerator and shipped at a cost of $40,000. Seems like it should have been carried in like the Ark of the Covenant. Nah. Just a picnic cooler.
We asked the delivery staff about the freezer, and they informed us that they had to defrost the cord-blood in order to administer it. Makes sense, huh? Plus, they diluted it a bit to make it go down easier. That's the bag there in the picture on the left.
They put the bag way up high and connected it to her IV ports, just letting gravity feed it in. It's hiding up top in the picture on the right.
And within about twenty seconds of it entering Krista's body, she started feeling the tickling in her throat and the coughing. The RN was incredulous -- there was such a small amount that had entered when she started reacting. But it was all "normal" reactions, so they continued. And so did Krista's reaction. Her nose started to fill up with with liquid and her coughing intensified, and her breathing became difficult. They had an oxygen sensor on her finger, so they could tell that she wasn't suffocating, but it was a very scary experience for Krista -- who was beginning to feel like she had signed up for a water-boarding experiment. Fortunately, Torquemada had the day off, so the ten in the room (doctors, nurses, interns, and who knows what else) gave her a fast acting diuretic that cleared it up within minutes (and gave her good practice using a bed-pan).
They also hooked her up to the oxygen, though it wasn't much help until the diuretic started clearing up her nose so she could breathe. You can see the tubes in her nose there in the picture on the left.
Then we sat around and waited to see if anything else bad would happen.
It took a total of two hours before the bag was empty. When everything seemed to be ok, the throng slowly dismissed and she was able to catch a small nap.
The peace didn't last too long, as nausea, aches, and a horrible headache became the soup du jour. The anti-nausea meds seem to cause some pain, while the pain releivers seem to cause nausea, and the combination comes with a headache and intense dreams that kept her jumping out of her sleep through the night. We're trying to back off of taking so much stuff, and Krista seems to be doing a bit better while we watch American Idol.
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade—kept in heaven for you, who through faith are shielded by God's power until the coming of the salvation that is ready to be revealed in the last time. In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.
1 Pt 1:3-6
The first sign that this wasn't going to be easy came from the administering RN, who asked Krista if she had any hard candies. Hard candies? Why? People getting a stem-cell transfusion often have a tickling sensation in their throats. Krista asked if she could use M&Ms, but the RN said that she didn't want her to choke. She wanted me (Mike) to run downstairs to get some candy, but I didn't want to miss anything.
Fortunately, someone mentioned that they had some lollipops at the transplant desk. Look... it's heart-shaped -- Krista's favorite! That was a nice touch.Once we got that settled, the RN proceeded to roll off some more possible immediate effects: fever, abdominal pains, coughing, and flu-like symptoms. This wasn't sounding very good.
The blood arrived in a red picnic cooler. I guess they had to put it in something, but I was expecting something a little more medical looking. The transplant coordinator had previously gone into great detail about how it was stored at -197 degrees in a 3-foot cube refrigerator and shipped at a cost of $40,000. Seems like it should have been carried in like the Ark of the Covenant. Nah. Just a picnic cooler.
We asked the delivery staff about the freezer, and they informed us that they had to defrost the cord-blood in order to administer it. Makes sense, huh? Plus, they diluted it a bit to make it go down easier. That's the bag there in the picture on the left.
They put the bag way up high and connected it to her IV ports, just letting gravity feed it in. It's hiding up top in the picture on the right.And within about twenty seconds of it entering Krista's body, she started feeling the tickling in her throat and the coughing. The RN was incredulous -- there was such a small amount that had entered when she started reacting. But it was all "normal" reactions, so they continued. And so did Krista's reaction. Her nose started to fill up with with liquid and her coughing intensified, and her breathing became difficult. They had an oxygen sensor on her finger, so they could tell that she wasn't suffocating, but it was a very scary experience for Krista -- who was beginning to feel like she had signed up for a water-boarding experiment. Fortunately, Torquemada had the day off, so the ten in the room (doctors, nurses, interns, and who knows what else) gave her a fast acting diuretic that cleared it up within minutes (and gave her good practice using a bed-pan).
They also hooked her up to the oxygen, though it wasn't much help until the diuretic started clearing up her nose so she could breathe. You can see the tubes in her nose there in the picture on the left.Then we sat around and waited to see if anything else bad would happen.
It took a total of two hours before the bag was empty. When everything seemed to be ok, the throng slowly dismissed and she was able to catch a small nap.The peace didn't last too long, as nausea, aches, and a horrible headache became the soup du jour. The anti-nausea meds seem to cause some pain, while the pain releivers seem to cause nausea, and the combination comes with a headache and intense dreams that kept her jumping out of her sleep through the night. We're trying to back off of taking so much stuff, and Krista seems to be doing a bit better while we watch American Idol.
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade—kept in heaven for you, who through faith are shielded by God's power until the coming of the salvation that is ready to be revealed in the last time. In this you greatly rejoice, though now for a little while you may have had to suffer grief in all kinds of trials.
1 Pt 1:3-6
Wednesday, January 28, 2009
And The Envelope Goes To...
Krista is doing much better this morning, though her blood counts continue to drop (white blood is at 0.14 today). The stem-cells are coming at 11 am today!
While Krista had a little extra energy this morning, she asked me to make a special post to thank Katherine Marton for the letter she sent earlier in the week. It was so wonderful that she and Tom were wanting to take our boys into their family last week. 
From the picture you can see that they (and Garret) had a great time together. That's a Darth Vader mask on top of Adam's head and a coyboy hat on Trevor's (and a book(?) on Garret's).
If you would like to send Krista a letter, you can send it to:
Krista English (Room #6125)
Ronald Reagan UCLA Medical Center
757 Westwood Plaza
Los Angeles, CA 90095
While Krista had a little extra energy this morning, she asked me to make a special post to thank Katherine Marton for the letter she sent earlier in the week. It was so wonderful that she and Tom were wanting to take our boys into their family last week. 
From the picture you can see that they (and Garret) had a great time together. That's a Darth Vader mask on top of Adam's head and a coyboy hat on Trevor's (and a book(?) on Garret's).If you would like to send Krista a letter, you can send it to:
Krista English (Room #6125)
Ronald Reagan UCLA Medical Center
757 Westwood Plaza
Los Angeles, CA 90095
Tuesday, January 27, 2009
A Day Of Rest
The doctors called today "a day of rest." By that they mean that the harsh treatments are over and they let her body process what's in there to let it finish it's work. As of this morning, Krista's white blood count was at 0.7, which seems to be right on track. The dropping numbers indicate that the marrow has successfully been disrupted. So, tomorrow they are planning on going forward with the stem-cell injection.
The removal of the chemotherapy brought some, but far from complete, relief. Krista still has regular bouts of nausea, diarrhea, and headaches -- all of which they have been able to help to some degree (when asked). She ate and kept down a small dinner of rice, toast, and applesauce, which is a good improvement. There was some suspicion that the muscle pain the other day might have been caused by a sudden drop of sodium brought on by the chemo. They adjusted her meds accordingly, and she seemed to improve earlier in the day (though there was a short return of the muscle pain in the evening).
In the midst of the suffering today, Krista had a moment to shed tears of joy. Alyssa and Cory Steffen had graciously taken our kids into their family yesterday (they'll be there for a while). Alyssa let us know today that the boys are doing great, and shared with us that their bedtime prayers were so precious that it brought tears to her eyes. That was so wonderful to hear how they have grown in their own faith through all this!
Another event today helped to get our minds off the immediate suffering, too. The hospital chaplain stopped by to see how we were doing and pray for us. She asked Krista what brings her hope in the midst of all this, and Krista recounted how God had led her to Psalm 41:1-2 as soon as she was diagnosed and the funny story about getting "raised up on her sickbed". It was good to remember how God provided that word of hope so early on.
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)
The removal of the chemotherapy brought some, but far from complete, relief. Krista still has regular bouts of nausea, diarrhea, and headaches -- all of which they have been able to help to some degree (when asked). She ate and kept down a small dinner of rice, toast, and applesauce, which is a good improvement. There was some suspicion that the muscle pain the other day might have been caused by a sudden drop of sodium brought on by the chemo. They adjusted her meds accordingly, and she seemed to improve earlier in the day (though there was a short return of the muscle pain in the evening).
In the midst of the suffering today, Krista had a moment to shed tears of joy. Alyssa and Cory Steffen had graciously taken our kids into their family yesterday (they'll be there for a while). Alyssa let us know today that the boys are doing great, and shared with us that their bedtime prayers were so precious that it brought tears to her eyes. That was so wonderful to hear how they have grown in their own faith through all this!
Another event today helped to get our minds off the immediate suffering, too. The hospital chaplain stopped by to see how we were doing and pray for us. She asked Krista what brings her hope in the midst of all this, and Krista recounted how God had led her to Psalm 41:1-2 as soon as she was diagnosed and the funny story about getting "raised up on her sickbed". It was good to remember how God provided that word of hope so early on.
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)
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