What a difference one week can make. Bill is still handling the ABT-869 drug very well. It is controlling the cancer cells in his blood, and has very few side effects. It is the answer to a prayer.
Thursday the doctors reported that Neutrophils were noticed by the lab in his blood. They are the good white cells that we need to fight infection. The numbers are small, but at least his bone marrow is beginning to produce them again.
Bill can now control his pain with the Dilaudid drug pump, and the most he has taken is .6mg in 24hrs. I think the pain is a little less each day, but that is my opinion, not his. The doctors say his pain is probably caused by gall stones.
Bill received red cells and platelets today. After his 4 hour nap (caused by Benadryl for the platelets) he then had a visit from the Recreational Therapist who brought into the room a big TV and a WII game. (Pronounced wee for those who do not recognize the word). He started out easy with the fishing, skeet shooting, and hockey games. I will know he is feeling better when he wants to play golf on it. This is a great hand-eye coordination game and kept him task oriented.
Earlier today Jan Gavin sent out a prayer request to our Sunday school class to pray for Bill to take a walk. He must walk the halls to prove he has the strength to move on to transplant. Finally at 4pm he gave in to my nagging and we went for a walk. Thanks to all of you who read the prayer and gave him the strength to walk out the door. His first time out of the room in over a week. He is now napping again.
I’m at the hospital tonight. Janine, Don and Maggie are coming in for the weekend. The snow and bad roads kept them away for Easter weekend. We can all be jealous of Janine. She and her girlfriends are going to the Oprah show on Monday. I’ll let you know the televised date later.
We arrived at the University of Chicago Hospital one month ago. We thank the Lord for one more chance at life, one more month that we didn’t think we had, and pray for the strength to go on. Amen
Friday, March 28, 2008
Thursday, March 27, 2008
March 27th- Two Steps Forward. One Step Back.
Bill has been doing so well, relatively speaking. The surgery area was healing well until……. the bile bag accidentally got caught on a hard surface and pulled at the incision. OUCH! Now he is back to square one. Healing all over again and taking the pain medicine. The new plan is to wait until Friday to see how he is doing.
Two plans are in motion.
1.Contact Loyola to see if they will accept him for a transplant.
2. University of Chicago oncology team is checking with their transplant team to see if he can be accepted there.
Bill will remain on the clinical study drug while he heals and the transplant process is coordinated. More on that later when we know which hospital will accept him.
Praise the Lord, we aren’t there yet, but we are getting closer.
Two plans are in motion.
1.Contact Loyola to see if they will accept him for a transplant.
2. University of Chicago oncology team is checking with their transplant team to see if he can be accepted there.
Bill will remain on the clinical study drug while he heals and the transplant process is coordinated. More on that later when we know which hospital will accept him.
Praise the Lord, we aren’t there yet, but we are getting closer.
Monday, March 24, 2008
March 24th- The Healing Power of Prayer
Several good things happened over the weekend.
The doctors could not control Bill’s pain with medications without overdosing him. He could only handle a small dosage, and it would last for hours, but during that time he had trouble eating, standing, speaking and was disorientated.
Finally, on Saturday afternoon, they put him on a PCAP (self- administer pump) that he could control the pain on demand.
Because he is on the pain medication (Dilaudid- .1mg every 10 min as needed) the staff wants someone in the room with him 24 hours a day. This is a huge relief to me. A “sitter” is by his bedside to assist him when I am not at the hospital. The charge nurse just asks me what my schedule is for the following day, and the other hours are covered. I can now stay at the hospital every other day for 24+ hours and go home for an evening.
The first night the sitter was here, she had Bill pushing the button for medication all night and day. He had 17 doses in 24 hours. The quantity was low for the time period, but the effects were over the top. Once again he could not communicate, eat or walk.
Since I have arrived at 1:30pm on Easter, Bill has had 2 doses of medication (9 hour timespand), he is not in pain, is eating well, and communicating again. I am now the Nurse Nazi and have laid down the law with the aides.
Bill received platelets twice over the weekend. Both were single donor, a 5 unit bag and a 10 unit bag. If you gave at LifeSource Blood Bank, know that your platelets were needed. Bill also had a reaction both days. It becomes more difficult to “type” his blood as he receives units of blood from a variety of people.
It is too soon for Neutrophil results, hopefully by Wednesday I will know more.
It was a weekend full of ups and downs, but overall, Bill seems better on this Monday morning.
Amen
Each day is a new adventure.
Hope you all had a wonderful Easter
The doctors could not control Bill’s pain with medications without overdosing him. He could only handle a small dosage, and it would last for hours, but during that time he had trouble eating, standing, speaking and was disorientated.
Finally, on Saturday afternoon, they put him on a PCAP (self- administer pump) that he could control the pain on demand.
Because he is on the pain medication (Dilaudid- .1mg every 10 min as needed) the staff wants someone in the room with him 24 hours a day. This is a huge relief to me. A “sitter” is by his bedside to assist him when I am not at the hospital. The charge nurse just asks me what my schedule is for the following day, and the other hours are covered. I can now stay at the hospital every other day for 24+ hours and go home for an evening.
The first night the sitter was here, she had Bill pushing the button for medication all night and day. He had 17 doses in 24 hours. The quantity was low for the time period, but the effects were over the top. Once again he could not communicate, eat or walk.
Since I have arrived at 1:30pm on Easter, Bill has had 2 doses of medication (9 hour timespand), he is not in pain, is eating well, and communicating again. I am now the Nurse Nazi and have laid down the law with the aides.
Bill received platelets twice over the weekend. Both were single donor, a 5 unit bag and a 10 unit bag. If you gave at LifeSource Blood Bank, know that your platelets were needed. Bill also had a reaction both days. It becomes more difficult to “type” his blood as he receives units of blood from a variety of people.
It is too soon for Neutrophil results, hopefully by Wednesday I will know more.
It was a weekend full of ups and downs, but overall, Bill seems better on this Monday morning.
Amen
Each day is a new adventure.
Hope you all had a wonderful Easter
Thursday, March 20, 2008
March 20th- Decision Delayed
March 20th- Decision Delayed
As anxious as the doctors are to start the bone marrow transplant process, the issues with the gall bladder must first be resolved. Bill continues to be heavily medicated to control the pain and consequently sleeps most of the day. The pain will continue until his body makes Neutrophils, or the good white cells. The Neutrophils will help heal the area around the tubing that goes through his liver.
It just happens that the hematologist from Loyola Hospital called our home today to check on Bill. (Have I ever mentioned how much I love this doctor?) She said it has been her experience that when a patient is neutropenic (low white cells) that the pain is terrible until the body makes the good cells. That chemo may have to be delayed to allow the good cells to grow again. That means the blasts will multiply also. Resuming chemo treatments later could possibly bring the blasts back under control. Bill cannot move onto a transplant until his biliary catheter surgery has healed and the gall bladder is less irritated. So, first things first.
We have always believed that things happen for a reason. When all this started in September I told Bill that everything that happened in his life to this point, prepared him for what he is now fighting. His faith, his desire to achieve and do the best he can, the wisdom learned from his parents, and the fighting desire to never give up. Bill has not given up. This is just one more obstacle. We are just waiting (not always patiently) to see what the Lord’s plan is next. We have already realized that our plan for the future was not the Lord’s plan.
Your prayers are appreciated so much. Thank you.
As anxious as the doctors are to start the bone marrow transplant process, the issues with the gall bladder must first be resolved. Bill continues to be heavily medicated to control the pain and consequently sleeps most of the day. The pain will continue until his body makes Neutrophils, or the good white cells. The Neutrophils will help heal the area around the tubing that goes through his liver.
It just happens that the hematologist from Loyola Hospital called our home today to check on Bill. (Have I ever mentioned how much I love this doctor?) She said it has been her experience that when a patient is neutropenic (low white cells) that the pain is terrible until the body makes the good cells. That chemo may have to be delayed to allow the good cells to grow again. That means the blasts will multiply also. Resuming chemo treatments later could possibly bring the blasts back under control. Bill cannot move onto a transplant until his biliary catheter surgery has healed and the gall bladder is less irritated. So, first things first.
We have always believed that things happen for a reason. When all this started in September I told Bill that everything that happened in his life to this point, prepared him for what he is now fighting. His faith, his desire to achieve and do the best he can, the wisdom learned from his parents, and the fighting desire to never give up. Bill has not given up. This is just one more obstacle. We are just waiting (not always patiently) to see what the Lord’s plan is next. We have already realized that our plan for the future was not the Lord’s plan.
Your prayers are appreciated so much. Thank you.
Tuesday, March 18, 2008
March 18th- P.U.S.H.
I will explain P.U.S.H. in a minute.
We have now come to the crossroads in our journey and it is time to decide which path to take.
The doctors report that the Leukemia is under control with the chemotherapy medication, but Bill is NOT in remission. Loyola Hospital does not like to do transplants when the patient is not in remission. There is little or no success.
Chicago University Hospital has been trying a transplant process (practiced in Spain) that involves both a 50% matched related donor and 50% matched cord blood sample. The combination allows the matched donors white cells to divide and mature immediately after the transplant, and the cord blood cells kick in about a week later. The combination has had a 10% success rate with Bill’s type of Acute Leukemia (FLT-3+).
Bill’s other option is to do nothing, there are no other options.
This is Bill’s decision, I’m along for the ride. You have been with us so far, now it is time to P.U.S.H. Pray Until Something Happens. Our prayers are for Bill’s comfort, he is still in a lot of pain from the surgery, and a clear mind to make this choice.
Thanks for being by our side on this journey.
We have now come to the crossroads in our journey and it is time to decide which path to take.
The doctors report that the Leukemia is under control with the chemotherapy medication, but Bill is NOT in remission. Loyola Hospital does not like to do transplants when the patient is not in remission. There is little or no success.
Chicago University Hospital has been trying a transplant process (practiced in Spain) that involves both a 50% matched related donor and 50% matched cord blood sample. The combination allows the matched donors white cells to divide and mature immediately after the transplant, and the cord blood cells kick in about a week later. The combination has had a 10% success rate with Bill’s type of Acute Leukemia (FLT-3+).
Bill’s other option is to do nothing, there are no other options.
This is Bill’s decision, I’m along for the ride. You have been with us so far, now it is time to P.U.S.H. Pray Until Something Happens. Our prayers are for Bill’s comfort, he is still in a lot of pain from the surgery, and a clear mind to make this choice.
Thanks for being by our side on this journey.
Saturday, March 15, 2008
March 15th- Encouraging News
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
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
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
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