Finally, some encouraging news in our journey with this aggressive disease. Bill is recovering nicely from the surgery. He is still in a lot of pain when movement is involved, but it can be controlled by pain killers. He is eating well and can sleep at any moment, except when Tennessee basketball is on the TV, of course.
The good news is the chemotherapy is still controlling the bad white cells in his blood. The white cell count is staying low (500), and he hasn’t needed any packed red cells or platelet transfusions for several days. (That means the blasts aren’t taking over). These counts aren’t normal by any means, but a body can survive. The doctors also feel the clinical trial drug is helping control the cancer. Amen.
The transplant team at the University of Chicago Hospital has a different course of action for bone marrow transplants. With a manageable amount of blasts in the bone marrow, they will still do a transplant. The doctors administer a small amount of chemo, then a clinical trial drug that lowers counts in preparation for a transplant. (A different drug from the present clinical trial drug). When the transplant donor has contributed his marrow, the actual transplant preparations for Bill (high doses of chemo and radiation) will begin.
Loyola Medical Center, our previous hospital, likes the bone marrow to be “clean” and that means fewer than 5% blasts and your bone marrow in remission. UofC will accept up to 10% blasts depending on other factors. 2 ½ weeks ago, Bill’s bone marrow was 85% blasts.
Monday, March 17th, Bill will have his 9th bone marrow biopsy. It takes about 2 days for the results. Future action depends on these results. In fact, everything depends on the results.
We pray that the Lord places his healing hands on Bill. Amen
Saturday, March 15, 2008
Wednesday, March 12, 2008
March 12th- What's Next?
I was glad I spent the night on Tuesday (my third night in a row to sleep at the hospital), because they called Bill for surgery at 7AM. During the night he received one bag of packed red cells and three- 5 unit bags of platelets, so sleep was really not on the schedule. That got his platelet count up to 119,000 (300,000 is low normal) and he could clot blood during surgery. The surgery only lasted one hour and a biliary catheter was in place. This catheter is placed in his right side, goes THROUGH the liver, and INTO his gallbladder. By draining the gallbladder the doctors hope the inflammation will subside, and the perforation will heal. This procedure was all done with the help of an ultrasound machine. The doctors saw 3 gull stones and said they were not going to cause a blockage. So an additional scope or surgery is not necessary at this time. Amen.
The reason they go through the liver is really for when the catheter is removed. The liver applies enough pressure to the gallbladder so when the tubing is removed, bile does not escape into the body. Bill’s gallbladder will be removed when he is healthier.
Movement is still difficult, but this evening his eyes are open and he is patiently waiting for his next pain pill. He won’t be allowed to eat until Thursday. And you can all imagine how that bothers me because I am all about food. I’m going to spend one more night at the hospital, just to help him. Hopefully on Thursday he will feel better.
Kari wrote me:
Happy moments……Praise God
Difficult moments…….Seek God
Quiet moments………Worship God
Painful moments……….Trust God
Every moment……....Think God
The reason they go through the liver is really for when the catheter is removed. The liver applies enough pressure to the gallbladder so when the tubing is removed, bile does not escape into the body. Bill’s gallbladder will be removed when he is healthier.
Movement is still difficult, but this evening his eyes are open and he is patiently waiting for his next pain pill. He won’t be allowed to eat until Thursday. And you can all imagine how that bothers me because I am all about food. I’m going to spend one more night at the hospital, just to help him. Hopefully on Thursday he will feel better.
Kari wrote me:
Happy moments……Praise God
Difficult moments…….Seek God
Quiet moments………Worship God
Painful moments……….Trust God
Every moment……....Think God
Tuesday, March 11, 2008
March 11th- Two Days of Tests
Just when things are going well for Bill, the doctors discover another problem. The extreme stomach pain Bill was occasionally experiencing turns out to be a gall bladder problem. After an ultrasound and CT Scan the doctors concluded he has 3 small gall stones, and a small tear in the lining of his gallbladder which is allowing bile to escape. Because he doesn’t have white cells to fight infection, this is a very dangerous situation.
Today they performed a HIDAscan (Hepatobiliary scan) in the Nuclear Medicine Room. This machine is like a big Geiger counter. A saline based tracer was injected into Bill’s veins. In his case, the tracer went right to his liver, and they watched it travel down the duct to his bowels. They were hoping it would go to his gall bladder so they could then see if it left the gallbladder through the tear in the lining. But, because of inflammation of the duct, it never entered the gallbladder.
If Bill was a healthy man, the doctors would just remove his gallbladder. Instead, on Wednesday morning between 7am and 9am CST they will place a drainage tube near his gallbladder to remove the bile. By doing this, they hope the inflammation of the lining will heal, and then the tear. Later they will scope his gallbladder to try and remove the gall stones. They say small stones are more dangerous then large stones because the small stones can block the ducts.
Bill will receive 2 bags of platelets, and 1 bag of red cells tonight. Then tomorrow before surgery, he will receive up to 2 more bags of platelets. The goal is to get a count of 75,000 in platelets.
Bill is still handling the clinical study drug very well. His counts are not improving, but they also aren’t getting worse, and his Leukemia Cutis (rash) has not surfaced as of this writing. Bill has more energy, appetite (if they would let him eat), and is more conversational. There are so many improvements that we hate to see any setbacks.
We will feel your arms wrapped around us in the morning.
Today they performed a HIDAscan (Hepatobiliary scan) in the Nuclear Medicine Room. This machine is like a big Geiger counter. A saline based tracer was injected into Bill’s veins. In his case, the tracer went right to his liver, and they watched it travel down the duct to his bowels. They were hoping it would go to his gall bladder so they could then see if it left the gallbladder through the tear in the lining. But, because of inflammation of the duct, it never entered the gallbladder.
If Bill was a healthy man, the doctors would just remove his gallbladder. Instead, on Wednesday morning between 7am and 9am CST they will place a drainage tube near his gallbladder to remove the bile. By doing this, they hope the inflammation of the lining will heal, and then the tear. Later they will scope his gallbladder to try and remove the gall stones. They say small stones are more dangerous then large stones because the small stones can block the ducts.
Bill will receive 2 bags of platelets, and 1 bag of red cells tonight. Then tomorrow before surgery, he will receive up to 2 more bags of platelets. The goal is to get a count of 75,000 in platelets.
Bill is still handling the clinical study drug very well. His counts are not improving, but they also aren’t getting worse, and his Leukemia Cutis (rash) has not surfaced as of this writing. Bill has more energy, appetite (if they would let him eat), and is more conversational. There are so many improvements that we hate to see any setbacks.
We will feel your arms wrapped around us in the morning.
Sunday, March 9, 2008
March 9th- Life is Good
Bill is back. And that is a good thing. He was given red cells last night, and Nurse Nancy predicts he will get platelets tonight. It seems that whenever he gets red cells, more oxygen gets distributed throughout his body and brain, and he is so much better. The doctors say no to my observation.
The blasts in his blood are down to 8%. Praise the Lord, the chemo is doing it’s job. He has gone from 82% to single digits in 10 days. I told him today that he almost died last week, and he said to me, “Why didn’t you tell me I was dying?” I’ll be sure to let him know next time…….right.
I am spending every other night at the hospital. One, to avoid rush hour traffic and the long drive, and two, to catch the doctor’s rounds in the morning at 7am.. Right now, we are training the residents and fellows that just started working this floor the first of the month. After 6 months of this, we know more than they do.
Bill will have an ultrasound of his gallbladder on Monday to see if that is causing his stomach problems during the night. A bland diet seems to be helping.
Tonight will be Bill’s 4th dose of ABT-869. Just 22 more to go. He seems to be tolerating it well.
We are at the top of the hill right now, and hope to enjoy these good moments as long as possible. We are still praying for our little miracle with this drug.
The blasts in his blood are down to 8%. Praise the Lord, the chemo is doing it’s job. He has gone from 82% to single digits in 10 days. I told him today that he almost died last week, and he said to me, “Why didn’t you tell me I was dying?” I’ll be sure to let him know next time…….right.
I am spending every other night at the hospital. One, to avoid rush hour traffic and the long drive, and two, to catch the doctor’s rounds in the morning at 7am.. Right now, we are training the residents and fellows that just started working this floor the first of the month. After 6 months of this, we know more than they do.
Bill will have an ultrasound of his gallbladder on Monday to see if that is causing his stomach problems during the night. A bland diet seems to be helping.
Tonight will be Bill’s 4th dose of ABT-869. Just 22 more to go. He seems to be tolerating it well.
We are at the top of the hill right now, and hope to enjoy these good moments as long as possible. We are still praying for our little miracle with this drug.
Friday, March 7, 2008
March 7th- ABT-869
For all our medical friends and family, here is the scoop on the clinical study in layman terms. I hope others, who want to know, will also understand this explanation.
Abbott Laboratories has a chemotherapy drug that has been successful in controlling the cancerous growth of some tumors because it blocks the growth of new blood vessels and kills cancer cells. It is now being tried on Leukemia patients, like Bill, who have a chromosome mutation called FLT-3 Positive. This is the mutation that is very aggressive, and other chemotherapy treatments have not been able to control it (as we well know). Bill is the third person at The University of Chicago Hospital to be involved with this study. The other patients are 2 and 3 weeks ahead of him. It is too soon to tell if the drug is successful, but the other patients are far enough ahead to know what side effects need to be addressed.
Bill will take 10 mg of this drug in liquid form, mixed into Ensure for 26 days. The first day (Thursday) he had a blood draw every 15 minutes for the first hour. Then every half hour, then hourly for the rest of the day. The laboratory wants to monitor the drug in his blood stream, and watch how his body is handling the drug. This drug is experimental and is not approved by the FDA. It has the same side effects as other chemotheraphy drugs. After the first day, Bill is doing fine.
Bill will have his second dose Friday night, and future doses will be in the evening with blood work being drawn twice daily.
I have learned that Bill will not come home unless his good white cells improve to the point he is no longer neutropenic. Just like we watched the cancerous white cells decrease this week, we will want the Neutrophils (good white cells) to improve next week. Blasts in his blood stream are down to 14%.
Bill was even better today. He has an appetite, we took three walks (together), and he asked that I bring his book to read. Bill has not wanted to read since December. (I guess it takes red cells, oxygen to the brain, to read). He is conversational again and I feel like “our Bill” is back.
I have begun to realize that you are all on this roller coaster ride with us. When I didn’t get a blog off for a few days this week, my phone was ringing. I don’t like to make entries when there is a problem, until the crisis is over. And sometimes there is a “crisis” everyday. But the past 2 days have shown improvement everyday.
Let us pray for Bill’s continued improvement and God’s work in helping new drugs be developed to fight disease. Amen
Abbott Laboratories has a chemotherapy drug that has been successful in controlling the cancerous growth of some tumors because it blocks the growth of new blood vessels and kills cancer cells. It is now being tried on Leukemia patients, like Bill, who have a chromosome mutation called FLT-3 Positive. This is the mutation that is very aggressive, and other chemotherapy treatments have not been able to control it (as we well know). Bill is the third person at The University of Chicago Hospital to be involved with this study. The other patients are 2 and 3 weeks ahead of him. It is too soon to tell if the drug is successful, but the other patients are far enough ahead to know what side effects need to be addressed.
Bill will take 10 mg of this drug in liquid form, mixed into Ensure for 26 days. The first day (Thursday) he had a blood draw every 15 minutes for the first hour. Then every half hour, then hourly for the rest of the day. The laboratory wants to monitor the drug in his blood stream, and watch how his body is handling the drug. This drug is experimental and is not approved by the FDA. It has the same side effects as other chemotheraphy drugs. After the first day, Bill is doing fine.
Bill will have his second dose Friday night, and future doses will be in the evening with blood work being drawn twice daily.
I have learned that Bill will not come home unless his good white cells improve to the point he is no longer neutropenic. Just like we watched the cancerous white cells decrease this week, we will want the Neutrophils (good white cells) to improve next week. Blasts in his blood stream are down to 14%.
Bill was even better today. He has an appetite, we took three walks (together), and he asked that I bring his book to read. Bill has not wanted to read since December. (I guess it takes red cells, oxygen to the brain, to read). He is conversational again and I feel like “our Bill” is back.
I have begun to realize that you are all on this roller coaster ride with us. When I didn’t get a blog off for a few days this week, my phone was ringing. I don’t like to make entries when there is a problem, until the crisis is over. And sometimes there is a “crisis” everyday. But the past 2 days have shown improvement everyday.
Let us pray for Bill’s continued improvement and God’s work in helping new drugs be developed to fight disease. Amen
Wednesday, March 5, 2008
March 5- Bill takes a stroll around the hospital
Two days ago Bill was so weak he couldn’t even get out of bed. He had been given morphine when he experienced extreme stomach pains, and he basically lost a day. He also had a blood clot in his arm over the weekend and had minor surgery to place a Hickman catheter in his chest and remove the PICC line in his arm.
This morning, when I arrived at the hospital, his room was empty. His shoes and socks are on the floor, his pants are on the bed, and shirt is off the hanger. It looked like he was getting ready for an escape. About 15 minutes later he strolls into the room. He says, “I went for a walk and I got lost”. He had been wondering the halls of the hospital for an hour. He spotted a transport person to ask for directions, the man found a wheelchair, and escorted him “home”. He said, “The next time I’ll drop breadcrumbs”. In his defense, this hospital is HUGE, with many different hospitals connected by walkways, and several wings to each section. I, myself, only know one way in and out.
Medically, Bill’s blood work is still improving. The blasts in his blood stream are down to 24%. The goal is 0. The doctors gave him a day of rest today, and will start the clinical study on Thursday. They are very pleased with his health going into the study.
Today was also a big day because our friends, the Wicks, Userys, and Luttrells flew in from three different states, visited for the whole day, and flew home this evening. We laughed, reminisced, cried, and prayed together. It meant so much to us that they took the time to be here for Bill and for me.
Our prayer this day is for new life as Bill begins the clinical study. May the Lord put his blessing on this drug that is about to enter Bill’s body. Amen
This morning, when I arrived at the hospital, his room was empty. His shoes and socks are on the floor, his pants are on the bed, and shirt is off the hanger. It looked like he was getting ready for an escape. About 15 minutes later he strolls into the room. He says, “I went for a walk and I got lost”. He had been wondering the halls of the hospital for an hour. He spotted a transport person to ask for directions, the man found a wheelchair, and escorted him “home”. He said, “The next time I’ll drop breadcrumbs”. In his defense, this hospital is HUGE, with many different hospitals connected by walkways, and several wings to each section. I, myself, only know one way in and out.
Medically, Bill’s blood work is still improving. The blasts in his blood stream are down to 24%. The goal is 0. The doctors gave him a day of rest today, and will start the clinical study on Thursday. They are very pleased with his health going into the study.
Today was also a big day because our friends, the Wicks, Userys, and Luttrells flew in from three different states, visited for the whole day, and flew home this evening. We laughed, reminisced, cried, and prayed together. It meant so much to us that they took the time to be here for Bill and for me.
Our prayer this day is for new life as Bill begins the clinical study. May the Lord put his blessing on this drug that is about to enter Bill’s body. Amen
Monday, March 3, 2008
March 3- One more day of chemo
Bill is still fighting the battle. The chemotherapy is doing it's job. The blasts in his blood stream have gone from 82% to 48% of his blood. His white cell count of Leukemia blasts have dropped from 24,000 on Wednesday to 2200 this Monday. Amen. We will watch the numbers drop as he is receiving chemo, then hopefully watch the numbers go up when healthy white cells can develop in his bone marrow after chemotherapy.
Bill received one type of chemo, Hydrea, for the first three days. Now he is receiving 4 days of high dose cyterabine. Tuesday will be his fourth day. He is extremely fatigued, has no appetite, and is just hanging on, hoping tomorrow will be better.
Bill begins the clinical trial drug on Wednesday. The clinical trial drug is one that attacks new capillaries and destroys them, therefore discouraging new growth of a tumor or in Bill's case, Leukemia Cutis. The organ that Bill's leukemia has chosen to attack is his skin. He may take up to 26 doses of this drug, which is a liquid injected into Ensure. He will be monitored closely the first day. At home we will keep detailed records for the Abbott company to track the drug. We will see if this drug is our miracle.
The family did make it to Chicago last weekend. Bill's 93 year old mother is amazing. We should all look so good at 80. The babies entertained us for 2 days and everyone got a chance to spoil them. Best of all, they brought a smile to Bill's face. It was a great weekend, especially since Bill was feeling better than he is now. I will have pictures on the next blog. Those babies are so cute.
Lord, We pray for Bill. Give him strength. Amen.
Bill received one type of chemo, Hydrea, for the first three days. Now he is receiving 4 days of high dose cyterabine. Tuesday will be his fourth day. He is extremely fatigued, has no appetite, and is just hanging on, hoping tomorrow will be better.
Bill begins the clinical trial drug on Wednesday. The clinical trial drug is one that attacks new capillaries and destroys them, therefore discouraging new growth of a tumor or in Bill's case, Leukemia Cutis. The organ that Bill's leukemia has chosen to attack is his skin. He may take up to 26 doses of this drug, which is a liquid injected into Ensure. He will be monitored closely the first day. At home we will keep detailed records for the Abbott company to track the drug. We will see if this drug is our miracle.
The family did make it to Chicago last weekend. Bill's 93 year old mother is amazing. We should all look so good at 80. The babies entertained us for 2 days and everyone got a chance to spoil them. Best of all, they brought a smile to Bill's face. It was a great weekend, especially since Bill was feeling better than he is now. I will have pictures on the next blog. Those babies are so cute.
Lord, We pray for Bill. Give him strength. Amen.
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