|
Click here to go back to the main page.
Sunday, June 10, 2007 10:22 PM CDT With deep regret, I write to tell you Bob fought till the end, Bob passed away today at approximately 3 pm.
Bob’s infection was resistant to the antibiotics and his blood pressure dropped this morning. I came to see him at 8:30 am; the oxygen setting on his machine was as high as it could go and he was still having difficultly getting enough oxygen in. He was conscious and my mom and dad, brother Marc and his girlfriend Star, my husband Nick and my cousin Tom were with him. My cousin Bernie also stopped in to see Bob this morning.
We got to talk to Bob and he smiled and waved at Dr. Stiff. Bob always felt better when Dr. Stiff was around. We are grateful to have spent the last few hours with him. He was one tough guy who didn’t give up; he continued to breathe on his own even after his pulse rate didn’t measure.
We all miss him very much; it’s been so hard for everyone, because Bob couldn’t speak. It’s surreal that he won’t be here. We all love him very much and we will all remember his smile.
I want to thank everyone for your prayers and support, Bob was very touched. I will post the arrangements when they become available.
Thursday, June 7, 2007 10:48 PM CDT Bob sat up in the chair twice yesterday, but he was too tired today; he slept most of the day. His oxygen level is still set high, 70-80 %. He still has a lot of fluid in his lungs. Bob wears ankle/leg braces for 4 hours at a time so his Achilles tends don’t tighten.
Wednesday, June 6, 2007 8:30 AM CDT Bob’s oxygen setting had to be increased to 90% yesterday. He still has a lot of mucus in his lungs, although he wasn’t coughing much. Bob got to sit up in the cardiac chair twice yesterday for about 2 hours.
Bob keeps asking why he can’t move his legs. He is moving his legs and arms a little bit more though. The sedation he's getting causes memory loss.
Tuesday, June 5, 2007 0:03 AM CDT Bob was still coughing on Sunday, and a little on Monday. He was coughing up mucus, the nurses had to suction out his trach. Bob still has an infection. I hope it goes away soon. It takes a lot out of Bob to cough. They had to increase his oxygen. Bob is anxious to get better. He always wants to know what's next.
Saturday, June 2, 2007 8:56 PM CDT Today Bob was sleeping all day; he was very tired from the last two days. I didn’t even get to talk to him this morning. My parent said he slept the whole time they were there too. Bob did have the same infection he had a few weeks ago. The nurse didn’t have to suction his lungs today, the new antibiotics worked!
The doctor said the next step is to get Bob moving, he won’t get any better lying in bed. It’s going to take hard work on Bob’s part to build his muscles. I know Bob he isn’t into exercise, I remember he had said, “I never worked out before I was sick, what makes you think I can now?” Although, this hospital stay Bob has wanted to do his exercises!
Friday, June 1, 2007 10:42 PM CDT Bob had a tough day Thursday and today. The nurses had to suction a lot of mucus from his lungs. Bob was coughing up a lot, which makes him very tired. His oxygen level was increased a few times because he was so exhausted.
Bob may have another infection. He did have a fever this morning, his antibiotics were changed yesterday and another one was added today. Cultures were taken but we don’t have any results yet. The suctioning did decrease by the end of the day.
We put the cap on his trach for a short time yesterday and today. The cap allows him to have a voice. Bob did tell us he's not ready to die and he’s scared that if the nurses make one slip-up he could end up dead. He wants us to always be with him. We try to schedule our visits so someone is always with him during the day. I did ask Bob if he likes having visitors. He said yes.
Bob's weight continues to drop; he’s about 96 lbs now. Bob also said he is worried he can’t move his legs, he’s afraid he might lose them. We reassured him it’s because he’s so weak, but it will take a long time for him to build his muscles back and he will be able to walk again. Bob also said he doesn’t want to lose his smile. It must be so hard for him, we were happy he was able to communicate his fears. I hope he feels better now.
Wednesday, May 30, 2007 11:19 PM CDT Bob didn’t have the surgery for the new feeding tube today. The doctor decided to hold off surgery untill Bob is in better condition. Bob has been making a lot of progress and the risks weren’t worth it. I’m glad; I was worried about him getting a staff infection.
The speech therapist gave Bob a “speaking lesson” today. She put a special cap on his trach which allowed him to have a voice! Bob tried talking with it and was able to communicate a few words! He will practice using it a few minutes everyday to build up his vocal cords.
Bob was able to move his arms a little more today. He actually rested his head again his hand. Bob will also have a physical therapist and an occupational therapist visit him to teach him how to move again. They may have him sit up in a chair tomorrow.
Bob kept saying he was hungry all day!! He hasn’t had anything to eat or drink in over 6 weeks. They did stop his feeding tube early this morning because they thought he was going to have the surgery today. Bob can’t eat or drink till they are sure he can swallow correctly. It may take a few days, although he did a great job with the speech therapist! She was surprised how well he did. I think everyone at the hospital is amazed with Bob’s progress. He is definitely the “cat” with 9 lives, more like 19!
Wednesday, May 30, 2007 1:19 AM CDT The ventilator was removed from Bob’s room on Tuesday because he was breathing on his own for over 2 ½ days! Bob still breaths through a trach collar; it’s an “oxygen mask” for his trach.
Bob’s sedation was reduced to 3 and his morphine may be reduced Wednesday as well. If Bob keeps up his progress, a therapist will start to teach him how to speak with his trach this week! I’m sure he’ll be excited to communicate.
The doctor also wants to change Bob’s feeding tube. He wants a tube inserted through his stomach, instead of the tube he has inserted down his nose to his small intestines. Bob may the have surgery to insert the tube today if they can fit him in. There’s always a risk for infection having surgery. Bob still hasn't gained any weight, he keeps losing!
Uncle Tony and Aunt Marion came by to see Bob on Tuesday. He was pretty tired so he slept most of the time.
Monday, May 28, 2007 9:57 PM CDT Bob has been consistent; he’s had 6 good days in a row! He’s breathing in the oxygen on his own (it’s not being forced into him). He’s was on the vent for approx. one day since Friday, and he was taken off on Sunday at 8 am, and he’s still off.
The nurse said she started suctioning blood from his vent today, she thinks it’s from his lungs; she’s not sure what’s causing it. I will be at the hospital tomorrow morning to talk to the doctor when he comes by on his rounds.
Bob has had a few visitors. He’s depressed and wants to go home; he doesn’t want anyone to leave. I don’t blame him; it’s got to be tough being so sick and not being able to say anything. It’s been six weeks since he was admitted to the hospital. And it’s been a month since he’s been able to talk.
Friday, May 25, 2007 0:12 AM CDT YEAH!!! Bob had two good days in a row! His sedation was reduced to 3 and he was breathing on his own from 10:30 am. I just called his nurse and Bob’s sleeping and still breathing on his own! They are going to let him go as long as he can. I hope he don’t get too exhausted.
Rhonda Kottke came by to visit Bob today! We met Ronda 4 years ago. Rhonda had a cord blood transplant at the University of Minnesota 5 years ago. We were introduced to her because Bob was thinking of going to U of MN for his cord blood transplant 4 years ago. Rhonda and I have kept in touch and Rhonda as spoken several times to Bob, on the phone, through the years. I think it meant a lot for Bob to actually meet her for the first time today! Rhonda says Bob is her hero because he’s had 3 transplants! She has had one and knows how tough one is to endure let alone three!
Rhonda is running the Chicago Marathon this October. This is her first marathon! She is running for the Leukemia and Lymphoma Society's, Team in Training; the money raised will go to the Leukemia and Lymphoma Society. Rhonda’s is running the marathon with Bob’s name on her shirt. We all agreed, including Bob, to be there on Oct. 7th, (which is 3 days after, the first anniversary of Bob's transplant) to cheer her on! If you'd like to sponsor Rhonda in her marathon, her webpage is: http://www.active.com/donate/tntil/RMKottke
Wednesday, May 23, 2007 11:11 PM CDT Today was a good day for Bob. Bob’s sedation was reduced to 4 and he was somewhat aware. I talked to Bob's neighbor Tess, and she told me their neighbor was shot and killed in a Chicago Ridge hotel. When I told Bob he was surprised so I knew he understood me!
Bob was calm and restful and he was breathing on his own for 5 ½ hours! Bob’s friend Dan visited him and my friend Lauren visited him.
Tuesday, May 22, 2007 11:05 PM CDT Bob’s sedation was still high today. I don’t know how aware he really is. He opens his eyes sometimes and looks around, but he can’t speak. His neck looked red and the doctor said his salt level was very low, which puts him at risk for seizures. He thinks it was the blood pressure medicine which caused his salt level to drop so he switched him to a different drug.
Bob looked very pale this morning, but by 1 pm he looked flushed. I touched his head and arms and legs and he was very hot at sweaty. I though he had a fever, but he didn’t. He doesn’t seam to be getting any better. His doctor said “there is no end in sight” on getting him off the ventilator.
It’s very hard for all of us because Bob can’t talk and let us know what he’s thinking or feeling. We think he has a lot to say about everything he’s going through.
Monday, May 21, 2007 10:55 PM CDT Bob's sedation was increased again and he was resting comfortably this weekend. My parents said that he didn’t even know they were there. Cary, Bob’s friend from high school and Marla from Metra stopped by to see Bob this weekend, but I don't know if he was aware.
Today Bob was slightly aware. My dad had him do some legs exercises and Bob was able to straighten his legs! My cousin Frankie stopped by to visit him today.
Bob’s sedation was increased so they could take another culture from his throat. Bob still has an infection in his lungs and he’s is immune to the antibiotics that counter it. They changed his antibiotics again to see if he responds.
Bob's bed sore on his tail bone seems to look better, but it does look as if he’s getting one on his calf. Bob’s neck looks better too; it’s not red and swollen.
Friday, May 18, 2007 8:44 AM CDT Thursday the ENT doctor looked at Bob’s throat and said everything was okay, he didn't have an infection. The nurses still had to suction blood from the back of his throat. They said its “old” blood.
During the day Bob’s sedation is reduced and it’s brought back up in the evening so he can sleep. Yesterday Bob wasn’t very comfortable, he said his chest hurt. John and Diane from high school visited Bob on Thursday.
Bob’s bed sore is very big, about 3” x 2” and 1” deep, you can see his muscle! Bob is so skinny, his feet are bigger than his calf, and he’s about 110 lbs. I can’t believe everything he’s had to endure.
Wednesday, May 16, 2007 5:38 PM CDT Bob’s sedation was reduced today and he was aware! He tried to talk but I told him he couldn’t speak until he’s completely weaned off the ventilator. Bob was breathing by himself for approximately 7 hours today. (The oxygen isn’t forced down him, but the oxygen passes by the tube, which allows him to breathe in the oxygen by himself.) He’s sleeping now, he must be exhausted. It was good to have Bob aware. He is able to have visitors now!
My mom called and said his neck was bleeding by the trach, the nurse had to suction out the blood from the back of his mouth. His neck looks swollen and red; we hope he doesn’t have an infection.
Tuesday, May 15, 2007 11:41 PM CDT Bob had the tracheotomy today. He was sedated before and still is. He is still sleeping with his mouth open and with his tongue to the side! His throat was bleeding, which made it look painful. He does look more comfortable though not having all that tape wrapped around his head and the tube down his mouth. I hope he is more comfortable.
Bob also has a very bad bed sore on his tail bone that’s infected. They are going to have a plastic surgeon look at it. I don’t know when they will start reducing his sedation.
Monday, May 14, 2007 0:11 AM CDT It was a quite weekend for Bob. He’s highly sedated and breathing well on the ventilator. In the mornings Bob’s sedation is reduced and he gets very restless. Bob will have a tracheotomy on Tuesday. My friend Dave Gust stopped by to see Bob on Sunday.
Friday, May 11, 2007 8:34 PM CDT Wednesday night around 2 am Bob’s blood pressure dropped and he had a fever. The nurse told us he had a bad night.
All day Thursday Bob was very uncomfortable; he had trouble breathing, he was trying to cough, his sedation was lowered and he was perspiring. The doctor told us Bob’s infection in his lungs had gotten worse. They didn’t even try to wean him off the ventilator. The pulmonary doctor and the transplant doctor wanted Bob to have a tracheotomy. The surgical team couldn’t schedule it till Tuesday, but they would try to fit him in on Friday.
They didn’t have time to give Bob a tracheotomy today; it looks like it will be on Tuesday. Bob’s sedation and morphine were increased and he was resting comfortably today. His steroids were reduced yesterday. The steroids were given because they’re not sure if he also has GVHD of the lungs. The risk of using steroids is that they lower the immune system which can lead to infections. The biggest risk for Bob now is the infection, he needs to beat it.
The doctors told us that the trach would make Bob more comfortable and it would be easier to wean him off the ventilator. Bob will have sedation for the surgery and he will be sedated for approx another day afterwards. He will probably have some sedation while he still has the trach. It may take another month to wean him off the ventilator. It’s going to be a long slow road ahead for Bob.
When Bob was conscious on Thursday morning I showed Bob the birthday gift he got from Laura. When I showed him the Harley gift bag his eyes lit up. He got a black Harley T-shirt with a beautiful decorative logo. Thanks Laura for making him happy!
Wednesday, May 9, 2007 11:03 PM CDT Today was worst than yesterday. Bob did the trial of breathing without the oxygen machine on for 1 hour, but his stats weren’t good enough for him to get off the machine. He had a very difficult day. I could tell he was in distress because he was trying to cough and his face was bright red, he was very agitated. It went on for the entire morning; he was finally more comfortable by 2 pm. His sedation and morphine were increased and the pulmonary nurse made adjustments to the settings on oxygen machine.
My cousin Tom stopped by to see Bob this morning and my parents were there too. The doctor discussed the possibility of a tracheotomy for Bob again today. I think he will get it tomorrow. Having the trach will allow Bob to move and sit up and possibility talk, and he won’t be on sedation. This may well be a very long process for Bob to get his lungs working again.
Tuesday, May 8, 2007 11:29 PM CDT It was a long rough day for Bob. This morning when I got to his room he was completely off sedation. Bob’s oxygen was turned off and he was breathing on his own with the tube still down his throat. It’s very hard for him to be alert and have a tube down his throat and not be able to move or talk, he gets very agitated, nervous and frighten.
When the doctor came in to check him, Bob started to turn red, choke and throw up. He threw up twice; he was so exhausted he was put back on the ventilator. It’s very difficult to see him struggle and not be able to communicate. Bob was given a small amount of sedation, but it didn’t keep him relaxed. My parents were with him the rest of the day, and they said he didn’t sleep. I hope he will be able to get some rest tonight because tomorrow the doctors will try again to take him off the ventilator.
Monday, May 7, 2007 11:28 PM CDT This morning while I was waiting in Bob’s hospital room for the doctor to come in, Bob’s heart rate started to climb. I had his nurse paged and by the time they got there Bob’s heart rate was at 176, it kept increasing all the way to 206 beats per minute. The doctor ordered a medication to lower this heart rate; they increased his oxygen to 100% and increased his fluids. Eventually his heart rate was stabilized. It was very intense watching everything. They ordered another EKG and more cultures. The doctor talked to me about the possibility of giving Bob a tracheotomy. Bob’s sedation was still at 5.
My parents were there the rest of the day and said Bob was restful, except for a period of time, when the alarms kept gong off on his oxygen machine, apparently there was water in his line. The doctors will consider taking Bob off the oxygen machine again tomorrow.
Bob gets very stress when his sedation is reduced. If you call his name he opens his eyes, but he doesn’t look at you, he just looks up. I hope all goes well when they try to take him off the oxygen machine.
Sunday, May 6, 2007 11:46 PM CDT Bob didn’t have a good day today. His sedation was reduced, which made him more aware. He became very agitated so his sedation was increased slightly. Bob would open his eyes if you touched his head. His face was bright red and his heart rate was up to 142 when I was there. By the time I left his heart rate was 135. My mom called Bob’s nurse tonight, she said his heart rate got up to 180 and he had an EKG and the heart doctor checked him. She said he’s restful now. I will be at the hospital early tomorrow morning to talk with his doctor. They are thinking of weaning him off the oxygen machine tomorrow.
Sunday, May 6, 2007 0:30 AM CDT It wasn’t much of a birthday for Bob. I feel so bad that he wasn’t aware of his birthday. My cousin Tom stopped by to see Bob in the morning. Bob’s friend Cindy, my cousin Frankie and Elisha also stopped by. My parents and brother Marc were there too. We bought a cake for the nurses and Dr. Toor. I hung a happy birthday sign on the wall and I bought balloons for Bob. When he gets out of the coma he’ll know he missed his birthday. Bob also has a lot of birthday cards to open.
Bob’s oxygen was reduced to 35 percent and the drug that keeps him in a coma was also brought down. It’s hard to see Bob upset when the nurses suction mucus out of the back of his throat. Bob’s face turns bright red and he squints. We all feel so helpless to see him like this.
Friday, May 4, 2007 10:50 PM CDT
Eight years ago today, (May 4 1999) Bob was diagnosed with leukemia. Seven months from today Bob got his 3rd stem cell transplant (2nd cord blood transplant).
Bob looked more restful today. His stats were better, his heart rate was down, 117 – 124 beats per minute, from 140- 124. His oxygen is at 40 percent and the PEEP is at 8. His food was changed to a higher protein version. Bob’s blood has a high carbon dioxide content, which isn’t good.
Having the steroids increased to counter the possibility of GVHD of the lungs, puts Bob at a higher risk of infection, because steroids suppress the immune system. It’s a tricky balance. The doctors don’t know exactly what’s causing Bob’s lungs to fill with fluid; they think it could be a combination of things, pneumonia, GVHD of the lungs, possible damage to the lungs from prior therapies, it’s a guessing game. Hopefully Bob’s new immune system can beat this.
Tomorrow, May 5th is a big day for Bob- It’s his Fifty Birthday! I only wish he was awake to celebrate. We’ll have a belated birthday party for Bob when he gets home from the hospital, and I know we'll celebrate when Bob comes out of the coma. Tomorrow is also Dr. Toor birthday too! Dr. Toor is the bone marrow transplant doctor who is doing rounds at the hospital this month. Dr. Toor was also Bob’s doctor for his first cord blood transplant.
Thursday, May 3, 2007 10:58 PM CDT
Bob looked more restful tonight. His oxygen level is down to 40% and the PEEP # is at 10. He will need to get the PEEP # down to about 3 and at that point he’ll probably get weaned off the oxygen machine. His steroids were increased a little because the doctor thinks it may be GVHD of the lungs. We’ll have to see how his chest x-ray looks tomorrow.
Thursday, May 3, 2007 0:08 AM CDT Tuesday, Bob’s oxygen level was raised to 65 percent because he wasn’t breathing well at 40 percent. His lung x-ray didn’t look better. Bob weight is approx 115 lbs.
It’s a new month so the doctors change rounds. Bob's primary doctor is no longer going to be on rounds at the hospital. Wednesday Bob’s oxygen level was dropped to 40 percent. He was better today than yesterday.
Monday, April 30, 2007 6:25 PM CDT
Nick and I went to the hospital last night after learning Bob was going back on life support. My Mom and Dad, and Marc and Star were there. Nick and I got there around 10 pm and the doctors were trying to stabilize Bob. Nick saw Bob’s arms and legs exposed for the first time, after seeing how thin Bob is and his labored breathing, Nick was numbed by it all. It’s very painful for us all to see to see Bob go through this. No one needs to experience what Bob’s going through. He’s such a brave and strong person, and he doesn’t even realize it.
I do know, from talking to Bob, after he had gotten out of the coma, that he could hear some things. So it’s good to keep talking to him.
Bob's oxygen level has been reduced from 100 percent last night, down to 40 percent today. Hopefully he’ll be able to come off life support soon. We’re taking it one day at a time.
Sunday, April 29, 2007 8:15 PM CDT
Bob was doing okay on Saturday. When I got to the hospital today, Bob had on an oxygen mask because he was having difficulty breathing.
My mom just called and said he’s having so much trouble breathing that he is going back on life support. Which means Bob will be in a drug induced coma and an oxygen machine will be breathing for him. This is a terrible set back. Please pray for him.
Friday, April 27, 2007 10:48 PM CDT BOB PULLS OUT ANOTHER MIRACLE!
Thursday Bob was completely out of it. He couldn’t talk or hold his head up. For about 10 seconds he was coherent then he was gone. We were very worried; Bob couldn’t move anything or communicate. We did continue to talk to him, hoping he would come out of it. By the evening Bob started to say a few words. By the time I left at 8:30 pm, Bob was making sentences!
Today, when I went to visit Bob, he was unaware of what had happened. He didn’t understand why the nurses were telling him he looked so good. He said to me, “did you see how skinny I am?!” I look like an Ethiopian! I had to explain what had happened to him. He was shocked to learn he had been so sick. We proceeded to fill him in on what went on for the last 2 weeks, explaining why he is so weak and unable to do simple things like hold a glass.
The first thing he had to eat was crushed ice. He said to me, “do you know what I’m going to get?!” “Crushed Ice!” He kept saying it tasted so good!
Bob is now on a liquid diet. He also ate Jell-O, Italian Ice, broth and coke. It was amazing to see him take it all in. He was in awe of it all. He also had physical therapy to get his arms and legs moving. He sat up in the chair most of the day. Everyone was amazed to see Bob being himself! What a difference a few days made! Bob is very grateful for all the prayers and kind thoughts everyone has sent him.
Wednesday, April 25, 2007 10:16 PM CDT Bob was agitated yesterday because he was going through withdrawals from the morphine. No wonder why he was so weird.
Last night, Bob was wrongly given morphine and a sleep medicine by the night doctor. This morning Bob was “out of it”. Bob’s regular doctor didn’t want Bob to have the morphine or a sleeping aid, because it could cause more harm than good, by lowering his ability to breathe and move. Bob’s lung x-ray didn’t look good. Bob threw-up even with the tube down his nose. Throwing-up is very dangerous, it could go into his lungs and then he would have to be put back on the oxygen machine. We made so much progress yesterday with helping Bob go through the morphine withdrawal, but today we were set back even further. Bob was so far gone today that he couldn’t even speak; he just had a far away gaze in his eyes. It was so hard to see him like that.
Bob’s digestive system had shut down when he was in the coma, so the doctor needed to tackle that problem too. Bob was given a laxative yesterday, and today he got a very small amount of liquid food through the tube in his nose. He did digest it! It’s a start.
Bob’s left arm and hand were even more swollen today. I hope it isn’t hurting him.
Tuesday, April 24, 2007 10:07 PM CDT Yesterday the doctor tried to take out the breathing tube, but Bob throw-up, so they kept the tube in and put him back on sedation. They took the sedation off again at 3:00 am this morning so he would be alert by 9:00am, and they tried again today.
This morning they were able to take him off the oxygen machine!! Marc and I were there this morning when Bob came out of the sedation. As soon as the tube came out of his mouth he started talking. They inserted another tube down his nose, so that when he throws-up it goes out the tube in his nose. He kept saying it hurts so much and he wanted the tube out of his nose. I told him that he could either throw-up or have the tube in his nose. So he stopped asking after awhile. There was a lot of fluid in his stomach, so the nurse had to suction it out through the tube in his nose. Then they hooked the tube to a suction machine and it kept coming out, eventually it turned to blood and stopped after a while. It was scary watching it.
He was still somewhat out of it, and agitated and talkative. He kept asking for something. He would ask if I’d lift his shoulders up, then, would I lift the bed up, put the bed down, lift his legs up, put his legs down.... It went on and on all day.
Bob did eat ½ of a banana popsicle, ½ of a root beer popsicle, and ½ of a lime popsicle. My mom and dad were at the hospital all day too. Bob was either asking me, Marc, Mom or Dad to please help him. I think it was mostly the confusion from all the drugs he had.
Bob's arms and hands are very swollen. Yesterday, they tested to see if there was a blood clot, but there wasn’t one. We don’t know why his arms and hands are so swollen. His right arm is bruised from his wrist to his elbow.
They doctor wouldn’t let him have any pain medicine or sedation all day because that would have slowed down his breathing, and they wanted to make sure he could handle breathing on his own. Bob kept saying his throat was sore. By the time I left tonight, he was given some pain medicine and he started slowing down. I hope he can get some sleep tonight. He must be exhausted, we certainly were!
Sunday, April 22, 2007 11:30 PM CDT
Saturday Bob was heavily sedated and he slept all day.
I saw the doctor today and he said he was more optimistic. Bob was sedated all day today too. The nurse thinks he can hear so I played an old Traffic CD. I thought he’d like to hear music instead of the oxygen machine.
His oxygen was turned down to 35 and the PEEP number was reduced to 6. Bob’s left arm is swollen, they aren’t sure why, he will get a test tomorrow to look for a blood clot. They turned the liquid food back on and Bob tolerated it better today. The doctor talked about possibly getting Bob off the oxygen machine in a day or two. They don’t want to rush it because they don’t want to have to put him back on it again. It’s painful having the tube inserted
Saturday, April 21, 2007 10:32 AM CDT My family was at the hospital late last night when Bob was coming out of the sedation. He wasn’t fully out, but the doctor didn’t think Bob had a stroke. His right eye seems to be lazy, but they don’t know why. His sedation was increased and so was the oxygen so he should be sleeping all day today.
Yesterday, Bob wasn’t able to digest the liquid food that he got through the tube down his throat, so the nurse put a suction tube in his mouth and down his throat to suction out mucus and the liquid. Even though Bob is heavily sedated he winced and tears rolled down the sides of his eyes. I thought he couldn’t feel anything, but I guess that’s not true. It's very hard to see him unable to talk and in so much pain.
Friday, April 20, 2007 5:15 PM CDT
I was at the hospital with my brother Marc this morning. We got to talk with the doctor. Bob’s been weaned down to 40 on the oxygen machine, which is good. He is heavily sedated; it’s called a “drug induced coma”, it’s to make him comfortable, because of the tubes down his throat. Bob is also lying on an air mattress; the nurses have to move/turn him every 2 hours so he doesn’t get bed sores. He’s been so sedated that he doesn’t open or move his eyes, but when the nurses move him he winces. He’s very uncomfortable when he’s moved.
My mom just called me to tell me they are going to take the sedation down and test his responsiveness. They are concerned he might have had a stroke. If he can pass the test they will put him back on sedation, it he doesn’t pass, he will be sent for a CAT scan. I’m leaving for the hospital now.
Today’s counts
WBC 15.7
Hyb 9.9
Plts 78
Thursday, April 19, 2007 9:59 PM CDT Not much news to report today. Bob was given more sedatives so he slept most of the day. His oxygen level is now at 50. That means he’s breathing 50 percent and the machine is making up the other 50 percent.
The culture test came back negatives, so the doctor is treating it as a viral pneumonia. His lung x-ray looked worst but, they are looking at his stats, which are about the same. Bob’s white count was 14.0, hemoglobin at 9.7 and platelets at 87. I was at the hospital late this evening and he was sleeping so he didn’t know I was there. It’s hard to see him so helpless and not being able to talk. I hope he gets through this fast.
Wednesday, April 18, 2007 10:13 PM CDT Yesterday was such a long day for all of us, it seams like a week has passed.
I was happy to see Bob more alert today! We got to untie his wrist bands and he could move his arms very gently, to scratch his nose! There’s a lot of tape wrapped around his mouth to hold the tubes in place. Bob also has a feeding tube that runs through his mouth to his stomach. They want to keep his digestive system active, so it doesn’t shut down. He only got about 8 ounces of a protein drink all day.
Bob has tried to communicate with us; he makes slight hand jesters, raises his eyebrows and nods his head, and has tried to write words! Though it’s tough to figure out what he’s saying. It’s like charades! He must have asked us at least three times today, when could he eat and when could he drink. The morphine is working! Unfortunately he won’t be able to eat or drink until he’s off the oxygen machine. It could be weeks or months! But I didn’t tell him that.
We didn’t get the results of the culture tests, but if its viral pneumonia there’s nothing they can give him, it would just have to take its course and hopefully Bob could beat it. He’s stubborn and not willing to give up so my money is on him! He’s always done a great job beating the odds.
I would say Bob is stable today. His chest x-rays looked a little better today, but they need to see how they look tomorrow. He was on a 100 oxygen yesterday morning; he was weaned down to 60 today. The doctor said Bob needs to get below 50 (anything above can damage his lungs) When Bob gets to 40 they’ll try and wean him off the oxygen machine.
White Blood Count 17.0
Hemoglobin 11.0
platelets 113
Tuesday, April 17, 2007 7:00 PM CDT Bob went to the clinic on Friday; he was coughing a little, and having a hard time breathing. They took a chest x-ray and thought he could have walking pneumonia. He went back to the clinic on Saturday and had another chest x-ray; it showed he wasn’t getting better so he was admitted to the hospital.
Monday he wasn’t better either. Last night he was worse, so they put him on life support. That’s were they put a tube down his mouth, to his lungs to give him oxygen and the machine does the breathing for him. He’s also sedated and has a morphine drip for pain. He can’t talk and he’s in and out of conciseness.
My brother, Marc and my parents were at the hospital today. My cousin Frankie also stopped by to see Bob.
I got to the hospital today after Bob was put on the oxygen machine. He's not able to talk but he recognized my voice and knew I was there. I told him he was doing well and he needed to rest and get some sleep. I explained to him that his hands are tired down so he doesn’t accidentally pull the tubes out of his mouth, in the middle of the night.
Bob also had a test today where they put a tube down his mouth to his lungs to get a tissue sample. We’ll have the test results in 24 – 48 hours. They’re testing to see if it’s fungal, bacterial, or viral pneumonia. He’s very weak because he’s lost so much weight and 2/3 of his heart was damaged from all the chemo and radiation he’s had in the past.
This is the worse it’s been for Bob, please keep him in your prayers and pray to give him strength.
Saturday, March 31, 2007 10:40 PM CDT Bob is still dealing with diarrhea and throwing-up. He still hasn’t been able to gain weight; he’s weighs around 126 lbs.
I took him home from the hospital today. He went in yesterday after eating at a Chinese restaurant with me, Nick and my cousin Joel. Bob only had broth soup, but he still got sick! I don’t think he’ll ever be able to eat at a Chinese restaurant again.
Tuesday, March 6, 2007 8:06 AM CST Bob is still dealing with the GVHD. Some days are better than others; he had a bad day Sunday. He doesn’t learn, he had Chinese food again and got diarrhea, so he had to go to the clinic and get fluids. Bob still weighs about 129 lbs.
The home nurse came Monday; she gave Bob more fluids and potassium. Hopefully, now he’ll stay away from Chinese food!
Thursday, February 15, 2007 2:03 PM CST Bob came home from the hospital Sunday Jan. 28th. He’s been feeling better since he’s being fed the protein drinks through the tube. His weight was up to 136 lbs.
Friday, Feb 9th the tube got clogged, so he hasn’t been getting the liquid drinks through the tube. His doctor has been out of town and the nurses don’t want to put the tube back in till they hear back from the doctor. Bob’s been trying to drink the protein drinks, he’s only gotten down 4 drinks a day and the doctor wanted him to have 5-6 drinks a day. Since he’s not getting the drinks through the tube, he’s down to 130 lbs. today.
Bob was allowed to have his cat back into his house last week. He can have visitors too. Bob’s been able to get out of the house to go to the grocery store and shop!
Bob goes to the clinic on Saturday to see if they are going to insert the tube back down his throat.
Friday, January 26, 2007 8:43 PM CST Bob hasn’t gotten any stronger or gained any weight. He falls down a lot, because his blood pressure is so low. He isn't drinking enough liquids so he gets fluids intravenously.
My mom said Bob had the worst night of his life on Tuesday. (After cousin Frankie came over with the Chinese food!) Bob had severe diarrhea and vomiting all night. My dad and mom took him to the clinic Wednesday morning and the doctor admitted Bob to the hospital.
I saw Bob today in the hospital. He has a tube in his nose that goes to his stomach. He is being fed a liquid protein drink 24 hours a day through the tube. The cardiologist saw Bob today, he said his heart isn’t strong but he didn’t think its any worse. Bob seamed to feel better today. The doctor said he may go home soon, but he will have to keep the tube in so he can get fed. They are feeding him 6 cans of Ozmolite (sp?) a day. When he goes home he will be fed the liquid 24 hours a day, eventually he will just be fed at night.
Bob had a bone marrow biopsy on Friday; we don’t have the results yet.
Thursday, January 11, 2007 5:39 PM CST Bob came over to my house on Saturday night for dinner. He at a little and we watched my wedding video afterwards. After the video Bob didn’t feel well, he thought he was going to throw up. Nick asked him if it was the video that made him sick! Fortunately, Bob didn’t throw up then, but when he went home he was sick all night.
Bob’s been throwing up everyday since. It looks like the GVHD is back strong. His steroids were upped but he’s still sick. He went to the clinic today, he got fluids. He was supposed to get a bone marrow biopsy, but they postponed it until Monday because Bob is so weak. He weighed 117.5 lbs today! I hope they can get his GVHD managed soon; Bob is too weak and frail.
Friday, January 5, 2007 6:01 PM CST I can’t believe it’s been so long since I updated Bob’s website. It’s been a very busy time with the holidays. Hope everyone had a Merry Christmas and Happy New year!
Bob has steadily lost weight, even though he’s eating a little. Once the steroids were tapered off, he got sick again. He is 125 lbs now! He is very weak and tired.
The doctor increased his steroids on Monday and he’s feeling a little better. It will take some time for the donor cells and Bob’s cells to get use to each other. I went to the clinic with him on Thursday and he got fluids again. Most every time Bob goes to the clinic he gets fluids, because he’s not drinking enough and when he has diarrhea he looses a lot of fluids too.
Today is my mom’s birthday and I am cooking dinner on Saturday night. The doctor said Bob could come to my house and have dinner. Bob hasn’t been able to go out because of his weak immune system, but the doctor said it was okay for him to come over. He’s looking forward to getting out.
Monday, December 18, 2006 3:39 PM CST Day 75
I took Bob home from the hospital on Saturday! He weighs 138 lbs. with his clothes on! He is still on steroids which is making him hungry. I made spaghetti and meatballs on Sunday and he ate it! It’s good to see him eat again.
The nurse came to Bob’s house on Sunday and Bob went to the clinic today.
Wednesday, December 13, 2006 9:00 PM CST I saw Bob today. He’s getting stronger. He’s not throwing up and his diarrhea is getting better.
He drank 2 protein drinks and he had a little mashed potatoes. He asked me if I had any chocolate. I just happened to have milk, white and dark chocolate candy on me! Bob took a bite of the milk chocolate and he said he had a little stomach cramp so he threw the rest out. He can add certain foods to his diet but he has to wait 3 hours to try a new food, they want to see how he reacts to each of the different foods. So far it’s been rice, mashed potatoes and chocolate.
Bob’s growing a beard and his hair on his head is staring to grow too. He’s still weak and needs to walk to get exercise. I don’t think he’ll get to go home this weekend.
Monday, December 11, 2006 8:46 PM CST Bob’s GVHD is responding to the steroids, his diarrhea has stopped and he’s going to try and eat rice and mashed potatoes tonight. He feels a little stronger too. He hopes to be able to eat so he can leave the hospital this weekend.
Thursday, December 7, 2006 11:18 PM CST Day 64
We got the test results back this morning. Bob has Graft-Verses-Host-Disease (GVHD) of the digestive system, which means the donor cells are attacking his digestive system. It can be treated with steroids. Bob started on the steroids this morning. He’s only getting ½ the dosage. Hopefully Bob’s diarrhea and vomiting will stop soon. He can only have a special protein drink and fruit punch to drink. He takes some of his meds orally the rest he's getting intravenously. Hopefully the GVHD responds to the steroids and Bob can get to eat again!
Wednesday, December 6, 2006 10:47 PM CST Bob still can’t eat and he still has diarrhea. I can’t believe everything he has endured. I know it’s been tough for him. He can only lay on his right side. If he lies on his back or his left side he has to urinate every 2 minutes. He’s been in the hospital for a week now; they still don’t know what’s wrong with him.
He had an upper GI and biopsy on Monday and he will have a lower GI tomorrow. We don’t have any results yet. The doctors think he may have a virus in his intestinal tract. I hope they can figure out what’s wrong with him by this weekend. I hate to see him get any more worse. Bob is very down. I don’t know how he keeps going. This is so tough for him.
Saturday, December 2, 2006 5:15 PM CST Bob is still throwing up. He will have tests tomorrow. He could have graft-verses-host-disease of the intestinal tract. He is getting his food and meds intravenously.
Wednesday, November 29, 2006 11:41 PM CST I took Bob to Loyola Medical Center this morning. He weighs 141 lbs with his clothes on! He can’t hold anything down. He was admitted to the hospital so he can be fed intravenously. They want to give his digestive system a rest for a few days, so he will get all his meds intravenously as well. After a few days they will put him on a liquid diet and eventually they’ll get him on solid food. He won’t be able to leave the hospital till he can consume 1500 calories a day. Needless to say, Bob wasn’t happy about going back into the hospital, but he didn’t have a choice. I hope he can get some rest now and not throw-up all day long.
Tuesday, November 28, 2006 6:28 PM CST Bob isn’t doing well. He lost 8 pounds since Thursday. He weighs 144 lbs with his clothes and shoes on and he’s 6 ft. tall! He has never been this skinny. He started throwing-up again on Sunday. He can’t eat anything. I’m staying with him tonight and going to take him to Loyola tomorrow morning. I’ll talk to his doctor to see what we can do for him. Pray that God will give him strength.
Sunday, November 26, 2006 11:19 PM CST Day 53
Sorry I haven’t posted in a while. I’ve had computer trouble.
Hope everyone had a great Thanksgiving! Bob couldn’t come over for Thanksgiving dinner because I have cats, the doctor doesn’t want Bob exposed to animals yet. He will have fewer restrictions after 100 days-out from his transplant; he’s half way there now!
My Mom has been staying with Bob every day and night. Bob sure keeps her busy. He takes a lot of meds during the course of a day. Mondays, Wednesdays, and Fridays Bob usually goes to the clinic. My Dad takes him at 7 am and stays with his at the clinic all day. Sometimes they don’t get home until 7pm.
Bob’s been eating a little more. I think he’s getting a little better, his progress is slow, but it’s to be expected for someone who’s had 3 transplants. It also takes longer for cord blood transplant patients too. Bob’s sprits are low. I hope he can look at his progress and see a future.
Monday, November 13, 2006 11:57 PM CST Bob’s been very fatigued. He has trouble walking by himself. The doctor says his heart isn’t strong. He is getting medicine and being monitored. Bob’s still not eating very much. It’s been tough for him.
Monday, November 6, 2006 11:31 AM CST Day 33
Bob is doing well for what he’s been through. He is very skinny though. I don’t think I’ve ever seen him so thin. He’s still very tired. He walked with me to the end of the driveway and back and he needed a nap!
He’s been going to the clinic every other day to get platelets and blood. The other days a nurse comes to his home to take his blood and give him transfusions.
Yesterday his white count was 2.9, hemoglobin 8.2, platelets 3, and his magnesium was low. The nurse gave him magnesium and platelets.
We have to get Bob to eat more so he can build up his energy.
Tuesday, October 31, 2006 6:06 PM CST Day 27
I went to Loyola yesterday to donate my platelets for Bob. It took 100 minutes hooked up to a machine. Bob will get them on Thursday. I also took Bob home from the hospital with me!! He was very anxious to get home.
The nurse came to his house twice today already. Once to draw blood and give him platelets and back again to give him red cells, magnesium, and potassium. He’s very tired, but happy to be home.
Bob still doesn’t have an immune system, so people need to ware a mask around him. He will be in isolation at his home for approximately another 2 ½ months. He can’t eat fresh fruits or vegetables and he can’t eat restaurant food. So no Chinese take-out!
Bob will go to Loyola’s out-patient Cancer Clinic tomorrow morning. He will have his blood checked and they’ll give him transfusions if he needs them. He’ll probably spend most of the day there. He will be going to the clinic every other day. His white count is at 0.9. It will take some time for him to produce blood on his own; in the mean time he’ll get transfusions.
Sunday, October 29, 2006 12:04 AM CST Day 25
Bob’s white count has gone up from .3 on Thursday to .4 on Friday, today he is .8!! He still gets platelets daily. I’m harvesting my platelets for Bob tomorrow at Loyola.
If anyone wants to donate their platelets for Bob you can call or email me. The process takes about 90 minutes. They take blood out from one arm, it goes through a machine, where the platelets get filter out, and then the blood goes back in your other arm. So you just lay in bed with your arms stretched out for about 1 hour and a half. You can watch TV to make the time pass quicker. By the time your blood gets filter through the machine, and gets back into you, the blood cools. So you can feel cold!
Bob may go home from the hospital tomorrow!! He will still have to go to the clinic every day or so to get blood tests and transfusions.
Thursday, October 26, 2006 9:09 PM CDT Day 22
Bob’s white count went up to 0.2 on Wednesday and today they are at 0.3!! We hope to see them go up again tomorrow. He got platelets yesterday and today. The fluid on his lungs is almost gone.
Bob’s been feeling okay. He hasn’t thrown-up in a few days. He’s been eating and biking on the stationary bike he has in his room. He’s board, not much to do, he’s very anxious to go home!
Tuesday, October 24, 2006 11:27 PM CDT Day 20
Bob doesn’t have a fever. His platelets were low again today so he had a platelet transfusion. He ate a little.
The doctor told him because he had a fever the new stem cells were fighting it off. Now, hopefully we’ll see his white count rise, it was still at 0.1 today. It's been tough on Bob's sprit, he left the hospital on day 18 the last time he had a cord blood transplant, this time it’s taking a lot longer than he anticipated.
Monday, October 23, 2006 10:50 PM CDT Day 19
Bob’s white count is still at 0.1. His platelets were at 15 so he got another platelet transfusion today.
The nurse told Bob they were going to put a tube down his throat to feed him, so he decided he would eat more instead. He had cereal and milk for breakfast, some chicken and potatoes for lunch, turkey, potatoes and apple crisp for dinner, and a Boost shake! It’s amazing what he’ll do when they threaten him!!
I forgot to write about Bob’s dark tan. He had gotten a reaction to some of his meds and it turned him bright red, then it turned into a dark tan. He looks like he’s vacationed in Florida for the last 4 weeks, not like he's been in the hospital!
Sunday, October 22, 2006 10:25 AM CDT Day 18 (18 days since he got the cord blood)
Bob’s white count went up to 0.3 on Saturday, but it’s at 0.1 today. He had a fever of 100.3 this morning, he gets Tylenol to bring it down. The fluid on his lungs is starting to subside. His platelets are at 11, hemoglobin is 7.5. He’s getting platelets today. He gets benadryl before he gets the platelets. The benadryl makes him very tired, so he goes to sleep for a while.
He had a little bite of chicken, a couple of popsicles, stuffing and some soup yesterday. So, he’s starting to get some food down! He felt pretty good yesterday. He got the oxygen during the night again, which makes him sleep better.
Friday, October 20, 2006 11:15 PM CDT Today, Friday the 20th, Bob is 16 days out from getting his new cord blood. His white count is still at 0.1 so the cord blood still hasn’t engrafted yet. The doctor said they’ll wait 21 days after giving the cord, if his white count has gone up they’ll start thinking about an alternate game plan, but they won’t do anything until 28 days-out.
Bob had a fever today. He’s really burning up. He did have a boost shake, and a dinner roll! He had a rough night last night. He had difficulty breathing so he was given oxygen. He likes the oxygen; he says it really helps him. He didn’t want them to stop it, but the nurse weaned him off it by morning. I was there tonight, the nurse gave him his oxygen so he was happy and he went to sleep.
Friday, October 20, 2006 0:01 AM CDT I spoke with Bob’s doctor on Wednesday night, he was concerned about Bob’s fever and that he might have an infection somewhere in his body. Bob’s heart was only beating at 25%, which means his heart couldn’t handle a bad infection. Bob’s white count is still low, so he doesn’t have an immune system to fight off an infection.
Thursday, Bob didn’t have a fever, so hopefully he doesn’t have an infection. Bob is trying to eat. He drinks Boost shakes and vitamin/mineral enriched water. That’s his idea of food! His white count went from 0.1 to 0.2, so hopefully we’ll see it increasing soon!
Wednesday, October 18, 2006 12:16 AM CDT Bob isn’t feeling very good. He has a fever and chills. He says each day is getting tougher and tougher. We were hoping he would get better with each day. He needs to eat to get his energy up, but he says all he does is throw-up every time he gets his medicine. He gets medicine every few hours!
He was getting food intravenously, but now they’ve decided to take him off, they think it might be contributing to the fluid on his lungs. He is coughing a lot also. His white count still hasn’t come up, he’s still at .01.
Bob thanks everyone who has left messages in his guest book. I read them to him each day and he really enjoys hearing from everyone!
Tuesday, October 17, 2006 11:19 AM CDT Too get everyone up to date…
Bob relapsed from his cord blood transplant in January 2005, just 4 months shy of his 2nd anniversary of his transplant. He went into a clinical trial for a drug called BMS354825, now called Sprycel. He did well on the drug, but his leukemia came back after 1 year. He got 2 rounds of high dose chemotherapy and went into remission. The remission was for a short time only so he needed another stem cell transplant.
I got married to Nick Treantafeles on September 16th! Bob was there to enjoy the celebration! It was a great day, everyone had fun. Bob wanted to be at the wedding so he waited till after the wedding to get another transplant.
Bob went to Loyola Medical Center for his 2nd cord blood transplant on Tuesday September 26th. He harvested his stem cells first, and then he had 3 days of radiation and 2 days of chemotherapy which wiped out his bone marrow. He got the stem cells from the cord blood on Wednesday Oct. 4th. Bob is in isolation because he doesn’t have an immune system.
Bob had a fever of 103 last night. He’s tired a lot, has his bouts of throwing-up and diarrhea, but he’s been doing pretty well. He has pneumonia but it’s getting better. He tries to walk as much as he can, in order to get rid of the fluid on his lungs.
Bob hasn’t eaten food since he started the transplant. He needs to eat 1500 calories a day and his white cell count has to be above 1 before he can leave the hospital.
We are waiting for his white cell count to rise. He is currently at 0.1. When his white count starts to rise then the new cord blood is taking over. The new cord blood will give Bob a new immune system, which will hopefully keep his leukemia away.
I just found out his neutrophils are coming up, he is at 100 so the cord blood is starting to engraft!
Wednesday, September 10, 2003 8:34 AM CDT We went to the Loyola Annual Bone Marrow Transplant Picnic on Sunday. What a great event!! I was surprised to see so many people! The transplant patients wore T-shirts with a number on their sleeve for the amount of years since their transplant.
We met a man at our table who was a donor for his sister 17 years ago! He told us his last time at this picnic was 15 years ago. It was the first picnic, and there were only 4 tables. This year’s picnic had at least 90 children and 100s of adults.
We met at least 4 people who had a BMT and are now running the Marathon! Bob has a long way to go!
I posted some pictures from the picnic in the photo album.
Saturday, September 6, 2003 12:31 AM CDT Well, Thursday was day 120 for Bob!! And he’s doing better than expected! He is still battling GVHD on his face. It’s getting a little better.
Tomorrow is The Annual Loyola Bone Marrow Transplant Survivors Picnic! My whole family will be going and celebrating with Bob and all the others who had a bone marrow transplant. Bob is riding his Harley there!! We never would had guessed back in May, that by September Bob would be attending the picnic and riding his Harley!
Wednesday, August 27, 2003 10:02 PM CDT Bob is going to the clinic once a week now, just on Tuesdays. Yesterday I went with my mom and dad. Bob got a “clean bill of health”! He can eat whatever he likes, he can be around his pets, he can go out in public, but he can’t be around people with colds or viruses.
Bob still has GVHD on his face. His skin is broken-out, dry and hurts. He is taking medication for it, but that will end on Friday. He lost weight too! He’s back down to his normal weight. His hair is growing in and he has a beard…although it’s a light one! Bob is still short of breath. He’s trying to get stronger, he says he rides his bicycle around the block 10 times each day, but he’s very tired afterward.
We are all VERY HAPPY he is doing so well!!!
Monday, August 18, 2003 11:22 PM CDT
The doctor told Bob on Friday that his biopsy looks good!! They’ll have the cytogentic results this week, that’s where they look at the molecular structure of the cells.
Bob had the catheter in his arm taken our on Friday. They couldn’t draw blood from it and it hurt him a lot. He also has a rash on his face. The doctor thinks its Graft verses host disease (GVHD). They aren’t giving him anything to treat it. They want a little GVHD, because it can also cause Graft vs. leukemia. (If any leukemia is present)
Monday, August 18, 2003 11:22 PM CDT
The doctor told Bob on Friday that his biopsy looks good!! They’ll have the cytogentic results this week, that’s where they look at the molecular structure of the cells.
Bob had the catheter in his arm taken our on Friday. They couldn’t draw blood from it and it hurt him a lot. He also has a rash on his face. The doctor thinks its Graft verses host disease (GVHD). They aren’t giving him anything to treat it. They want a little GVHD, because it can also cause Graft vs. leukemia. (If any leukemia is present)
Monday, August 11, 2003 10:49 PM CDT Bob went to the clinic on Friday and had a bone marrow biopsy. Dr Stiff did it and it hurt a lot. We won’t know the results for about a week. The catheter in his arm still hurts. He will have it for another 3 weeks.
I saw Bob yesterday and his hair is growing back! He looks thin; he hasn’t been eating much because he doesn’t feel good. Day 100 is Friday; Bob will be able to eat regular food then. He hopes to get his appetite back.
Tuesday, August 5, 2003 10:08 PM CDT Bob went to the clinic today. They had to put another catheter in him because they had a hard time getting an IV in his arm. His veins are very small from all the chemo he’s had. The catheter is in his left arm and it hurts him a lot.
Bob is at Day 90 today. He is getting another bone marrow biopsy on Friday. Say a prayer its good!!!
Bob will be able to start eating regular food on Day 100. He’s looking forward to it!
Thursday, July 31, 2003 0:06 AM CDT Bob is feeling better. Monday night while Bob was sleeping, he unknowingly pulled-out the catheter in his neck. When he woke up he realized it was out and he didn’t even bleed! He went to the clinic on Tuesday and the doctor decided not to put another one in. Bob’s very happy it’s out! He said it constantly hurt him. He probably would have had it in for another 4 weeks. Bob gets magnesium every time he goes to the clinic, so from now on he’ll get the magnesium in an IV in his arm.
Sunday, July 27, 2003 10:49 PM CDT Bob was nauseas today. He isn’t eating very much at all. He’s still very tired, but getting a little stronger as the weeks go by.
I posted new pictures (and one old one) in the photo album!
Friday, July 25, 2003 11:48 PM CDT Bob is 79 days out from transplant. He is doing well. I saw him at the clinic today. He wasn’t feeling well yesterday though, he was throwing-up and had diarrhea. They are watching him closely for Graft verses host disease (GVHD). The doctor said Bob is doing better than expected. Although he’s 1% positive on the FISH test, it could be a false positive, the number is very low. (People tend to relapse when the percentage is higher.) They will do another biopsy at 100 days out from transplant. He is 100% donor cells in his marrow, which was better than what the doctor expected.
Bob’s platelets were at 100 today! Normal is anywhere from 150 – 400, anything under 20 is considered critical, and that’s when Bob was getting platelet transfusions. Platelets are the cells in the blood which cause the blood to clot. Having a low platelet count can cause bruising and internal bleeding. The platelets are the last counts to recover, so it was exciting to hear Bob’s were at 100!
Bob’s white count is at 5.0, normal is from 4 – 10. The white cells fight infections. When Bob had a low white cell count he was very susceptible to infections.
His hemoglobin is 9.5, normal is 14.0 – 17.0. The low hemoglobin count attributes to his fatigue.
Thursday, July 24, 2003 0:55 AM CDT Bob doesn’t have the fluid to flush him out anymore. He didn’t have to get it everyday last week. The blood in his urine stopped. It was probably from cytoxin, one of the chemos he had in the past. He’s feeling better. He was at the clinic on Tuesday and the doctor told Bob he is 100% donor cells in his marrow and 1% positive by FISH test. I’m not exactly sure what he’s 1% positive for, but I’ll ask the doctor on Friday when he goes to the clinic again. So far so good, he’s doing very well. I believe Bob is truly a miracle!!
Tuesday, July 15, 2003 10:00 PM CDT Bob was at the clinic all day Monday and today. He has blood in his urine, they ran some tests and he hasn’t gotten the results yet. They think it’s from one of the chemos he’s had in the past, the chemo could have irritated the lining of his bladder. They are flushing him with a liquid. He is getting flushed at the clinic for 10 to 12 hours during the day. They also gave him a liquid he carrys around in a backpack to flush his system out at home. He said it weighs about 25 pounds. The blood in the urine stopped this afternoon, but he said it’s still painful.
His platelets went from 57 to 52, his white cell count is 3.5, his red cell count is 2.4 and his hemoglobin is 9.7. He is wiped out after spending all day at the clinic, so he just sleeps when he gets home. He’ll be going to the clinic everyday this week.
Bob said he doesn't know how my dad can keep going...he has to be at Bob's house at 7:30 am, drive Bob to the clinic, which is about 45 minutes away, stay with him at the clinic all day, drive Bob home, then he has to drive back to his house which is another 35 minutes. Then he goes to bed and has to be at Bob's house at 7:30 am the next day to start all over again!
Monday, July 14, 2003 0:30 AM CDT Bob is going to the clinic today. He thinks he has an infection. They’ll probably run some tests and give him more antibiotics. He says he’s really tired and bored, he’s can’t wait to feel better.
Friday, July 4, 2003 4:13 PM CDT YEAH!!! Happy 4th of July!! Bob’s biopsy looks good!!
Bob went to the clinic today. The doctor told him is biopsy looks good! That’s the findings from the pathologist viewing the slides. The cytogenetic results won’t be back for a week, that’s where they look at the molecular structure of each cell. They can tell if it’s a healthy cell or an irregular/leukemia cell.
His bone marrow is hypo cellular, meaning there aren’t very many cells there. It will take a long time for the stem cells from the cord blood to engraft and produce enough blood cells so Bob won’t have to get transfusions of platelets or red blood.
Bob feels a lot better now than he did during the week. He has more energy and he doesn’t hurt all over. His white count is 2.5, his platelets 26, (he didn’t need to get a platelet transfusion), and his hemoglobin is at 8.2.
Hope everyone has a great 4th of July!!
Wednesday, July 2, 2003 10:47 PM CDT Say a prayer for Bob.
Bob is not feeling well. He’s had a rough week. He’s very tired and he aches all over, his joints hurt, his muscles hurt and he’s too tired to do anything. He went to the clinic yesterday. He got platelets and he had a bone marrow biopsy. We should know the results by Friday.
Today is the 56th day since Bob’s transplant. It’s been that long since he’s had high dose chemo. It’s been the chemo that’s killed the leukemia in his body. He went 6 weeks after the last round of chemo, then the leukemia returned. The doctors originally gave Bob a 50 percent chance of making it through the first 120 days from transplant. He’s half way there, we are praying his biopsy is good, and that all his cells are clean, no leukemia cells in his marrow.
Wednesday, June 25, 2003 9:33 PM CDT Bob is very tired today. He has no strength, he slept all day.
Bob went to the clinic yesterday. His white count was 4.1 his hemoglobin was 8.3 and his platelets were 16. A nurse is coming over to his house tomorrow to give him platelets.
Thank you to Phyllis, my Mom’s friend for donating platelets on Friday!
Bob’s friend Dino, the manager at “Glow” is donating platelets tomorrow.
Wednesday, June 18, 2003 9:56 PM CDT Bob’s appetite is good, but he still can’t taste anything. His white count is at 5.2. They also dropped the steroids to 4 pills a day. His energy level is still very low. He sleeps and reads a lot.
Bob is still in isolation and has to be careful being around people. He is 42 days out from the transplant. The first 120 days are crucial. He can’t get a cold or an infection. His immune system is similar to a baby’s. He doesn’t have the normal protection against the viruses and bacteria encountered in everyday life. Therefore contact with the public is restricted. It can take a year before his immune system is fully developed.
The doctor did tell Bob he can ride his bicycle around the neighborhood. I guess all that riding the bike in the hospital should help him now!
Tuesday, June 17, 2003 2:20 PM CDT Bob is feeling better, his legs aren’t as sore, and his infection is clearing up. He still can’t taste food; and he’s looking forward to having his taste buds return. Bob is still getting platelets a few times a week.
Thank you to Cary’s daughter Margaret!! She drove Bob to the clinic last Friday.
Also, thank you to Joe, my cousin Cathy’s husband, for donating platelets!
PS. Sorry, I haven’t posted for awhile. I was volunteering at the US Open at Olympia Fields. It was a great week; it was like being on vacation!
Tuesday, June 10, 2003 11:28 PM CDT Bob went to the clinic today. His platelets were at 7 so they gave him a platelet transfusion. His hemoglobin was at 10.0, that’s pretty good for him. His white count is at 4.3, it’s dropped because he’s not taking the nuepogen shots.
Sunday, when I cleaned and changed the bandaged on his catheter, we noticed the inflammation the other side of his chest where they removed the old catheter. It’s still infected. Today they gave Bob MORE antibiotics to counter the infection.
Thanks to Mike, Bob’s friend from “the buzz” for donating platelets today!!
Bob wants to thank everyone, who has gone out of their way and taken the time, to donate platelets for him. He really appreciates it!
He also wants to thank all his friends, and those he don’t even know, for all their thoughts and prayers…he’s truly touched and appreciates everyone’s support!
Saturday, June 7, 2003 10:22 PM CDT Wednesday the nurse came to Bob’s house to give him Bill’s platelets. The nurse called Bob and told him Bill’s platelets were going to expire the next day, so she wanted Bob to get them that day.
Bob’s been feeling better, although he says he’s progressing very slowly. Friday he was at the clinic all day. His red blood count was low so they gave him 2 bags of red blood. He also got platelets. His legs are feeling better; they don’t hurt as much. He’s lost 10 pounds despite his large appetite!
Tuesday, June 3, 2003 9:43 PM CDT Bob went to the clinic today. His platelets were at 27 so he didn’t need to get any today. His white cell count is at 7.2 it dropped a little because he stopped taking the nueprogen shots.
Both Bob and my dad were sleeping when I got to the clinic this morning. Bob says his legs are real sore; it’s hard for him to walk. The doctor told him he could take a pain killer, but it would make him sleepy, and then he probably wouldn’t exercise. So, Bob is going to brave it out and not take the pain killers.
The doctor cut back the steroids some more today. They have to be careful because if they cut back too far, he could develop Graft-Versus-Host Disease (GVHD). GVHD is where the cord blood recognizes the patient (Bob) as foreign and attacks the body. If he gets GVHD they’ll have to increase the steroids to counter act it. So, it’s a delicate balance between decreasing and increasing the steroids.
Thanks to Bill, Bob’s friend for donating his platelets!!
Monday, June 2, 2003 10:51 PM CDT Bob went to the Clinic on Sunday. He got Debbie’s platelets; they said hers were “good platelets” there were a lot there!
Bob’s white cell count is at 8.3, he’s going to stop taking the neuprogen shots now. His hemoglobin is still low, which is contributing to his fatigue. Bob legs are very sore, he can barely walk. He is also being weaned off the steroids, they think the steroids are making his legs sore.
Bob found out yesterday that he’s not supposed to have a fish tank in his house. If you know Bob, he’s always had fish. So my dad and Bob’s friends, drained his fish tank and took it apart. Bob's friend, Dave took the tank and fish home with him! (Watch...the next thing they‘ll make Bob get rid of is his water bed!)
Friday, May 30, 2003 5:05 PM CDT Bob has been doing well though he is still very tired. He said he’s never been this tired in his life.
He went to the clinic today. His white count is up to 6.1, it could be a false reading because of the daily neuprogen shots. His platelets were at 15, so he got platelets again today.
He has to go to the clinic again on Sunday.
Debbie, Bob’s high school friend donated platelets for Bob yesterday. Thanks Debbie!!
Tuesday, May 27, 2003 10:50 PM CDT Monday the nurse came to see Bob at his home and took blood, she came back later in the day and gave him platelets, his were at 7. (Normal is 150 -350) He was very tired. They are weaning Bob off the steroids, so that's making him tired too. He doesn’t have the stationary bike at home, so now he has to climb the stairs! He says it’s too hard!!
Today my dad took Bob to the Loyola Out Patient Clinic for more blood work. It’s a new building, and he has a private room with a TV and a VCR! It’s very nice, a lot better than the hospital. Bob’s platelets were low again today, so he got more platelets. His white count is rising, it’s at 2.1! He saw Dr. Stiff and he reminded Bob he’s still in isolation in his home. He‘s not suppose to have a lot of visitors, and everyone who visits needs to wear a mask. No one can visit if they have any kind of cold! He can't have any animals in his home either; he can't even sleep on his down pillows!
Thank you to my cousin Frankie for donating platelets for Bob today!!
And a special Happy Birthday to my Dad!! It’s his 70th today!
Sunday, May 25 2003 11:15 PM CDT Bob left the hospital today!!
He was happy to be home. (Actually they needed his room for someone else!)
His white cell count was 1.1, his platelets were at 18, he needs a transfusion, but they wanted his room, so a nurse is coming over to his house tomorrow to give him the platelets. He has an 8:30 appointment Tuesday morning at the out-patient clinic. He’ll be going there often until his counts stabilize.
Bob will be in isolation in his home for the next 3 months. My parents had to get his house ready for him this past week. He can’t have live plants or pets, (thanks to Howard for taking care of Bob’s cat) and his whole house had to be cleaned- all the windows, floors, carpets, everything. He’ll have to maintain it...now he’ll have to hire a maid!
Friday, May 23, 2003 11:23 PM CDT Bob was disappointed he didn’t get to go home today. His white count dropped to .8 but his platelets did stay up – he was at 37. (Those were my platelets!)
Yesterday, I had to get “certified” to clean Bob’s catheter and change his bandage. Someone has to do it when Bob comes home from the hospital. His bandage needs to be cleaned and changed every other day. It’s a sterile procedure, I had to wear gloves and a mask and Bob had to wear a mask. The nurse was there making sure I did it right. It wasn’t a pleasant experience. When I removed the old bandage, Bob’s skin can off with it! It hurt him pretty bad. Then I had to clean it with alcohol, that made it hurt even worst! By the time I was finished, I was exhausted!! (I could never be a nurse!)
Thursday, May 22, 2003 1131 PM CDT It was another "quiet" day for Bob. His infection on his neck is looking better, and the bruise on is side looks like its clearing up. His white cell count is at 0.90. His platelets were at 18, so he got my platelets today.
Bob ate some soup. I forgot to ask him if he biked today. He was real tired when I saw him. I talked to the doctor; he said Bob may be going home tomorrow!! We'll know more when the doctor sees him in the morning and takes his blood work.
Donna…Thanks for offering to make lasagna for Bob he definitely wants it! … just remember to put it in single size servings and freeze it. He’s looking forward to eating it when he gets home. (Maybe you can get him to eat!)
Wednesday, May 21, 2003 11:55 PM CDT It was another good day for Bob. Not much has changed. His infection and bruise haven’t changed. His white count is going up, he’s at .6 now. His platelets are at 25 so he didn’t need to get any today. They did stop feeding him intravenously. So now he’ll really have to eat!
My mom donated platelets for Bob today. She was told her veins are small, they didn’t know if it was going to work, but everything turned out okay.
Bob thinks he may be going home soon!
Tuesday, May 20, 2003 11:00 PM CDT It was a quiet day today for Bob. He biked 3 miles today. He ate soup and sherbet again.
Bob’s platelets were at 12 today so he got platelets again. I donated my platelets for Bob today. (I had to cancel a week ago because I had a cold) He’ll be given my platelets in a day of two. My Mom is donating her platelets tomorrow. Her friend Phyllis is donating on Friday. Remember; please call me if you schedule an appointment at Life Source.
Bob got an insulin shot and a Neuprogen shot today. The doctor drew an outline around Bob’s bruise on his stomach; he wants to see if it’s getting bigger. His infection and bruise are still sore.
Overall it was a nice quiet day for Bob. He’s looking forward to going home.
Monday, May 19, 2003 10:08 PM CDT It was a slow day for Bob. He’s very tired. He did bike 3 miles today, and he biked 3 miles yesterday. He also walked a little with my dad. He’s still not eating much. He had some soup and sherbet (not at the same time!). He has a long way to go before he reaches 1500 calories a day.
The nutrition he gets through his IV causes his blood sugar to rise, so he gets insulin shots. His infection in his neck still looks the same, so does the big bruise on the side of his stomach. Both still hurt and he’s still icing his side.
Bob was very upset today because they asked him to give up his room and go in a room with another person! Bob’s white cell count is extremely low, it’s at 0.4 Normal is 4.8 - 10.0 He is in the isolation unit because he’s at risk of infection. He wouldn’t be isolated if they put him in a room with someone else! Bob stood his ground and said “no way” he’s going into a room with another person. So thankfully they left him alone. It sure stressed him out today.
Bob’s white count is starting to rise. About a week ago he was at zero, then 0.1, then 0.2 now he’s at 0.4. Once he gets to 1.0 or higher he might be able to go home. It will probably be a least another week.
Sunday, May 18, 2003 11:16 PM CDT Bob feels beat-up. His infection really hurts and the new catheter bothers him because it’s at the base of his neck. He says its hurts to turn his head. I posted a photo of his neck in the photo album...it's not for the squeamish!
He also has a BIG lump and bruise on the side of his stomach. It’s from a neupogen shot he got a few days ago. It’s swollen and sore and he's icing it. (Like he doesn’t have enough things that hurt him already!) He’s been getting neupogen shots every day since his transplant. Neupogen simulates the marrow increasing the production of white blood cells.
Bob is giving the nurses a hard time. They want him to eat at least 1500 calories a day. (Five cans of Boost per day) Bob says he can’t stomach one can a day! He won’t be going anywhere till he starts eating more.
Saturday, May 17, 2003 11:11 PM CDT Bob’s neck is still infected. It looks worse than the photo I posted. It’s a staff infection, and not contagious. He’s still getting antibiotics. If it doesn’t clear up, they may have to drain it.
He was in a good mood today. He actually ate some food. He had some soup and sherbet. If he keeps eating they’ll stop feeding him through his IV. Overall he’s very tired.
I changed the home page photo again. Bob says the old picture doesn't look like him anymore. So...now this is the "current" Bob.
I also posted a new photo in the photo album. It's a picture taken on May 7th of Dr. Stiff getting ready to "hang" the cord blood for Bob. ( My cousin Donna thought Dr. Stiff was a funny name for a doctor!)
Thursday, May 15, 2003 10:47 PM CDT Bob wasn’t feeling well today. His infected catheter hurt him a lot. They gave him morphine for the pain, but it didn’t seem to do much. The doctor decided to take it out and put in a new one. Bob wasn’t happy about that. He had to get more platelets before the surgery so he wouldn’t bleed to death. The new catheter is on his right side. He’s says the new one hurts too. If this one doesn’t work, they’ll have to put a catheter in his groin. Ouch!! He doesn’t want that to happen.
I posted new photos in the photo album. The photo on the home page is a picture of Bob before he started chemo, back in April of 2001. Bob sure misses his hair! He said the only good thing about chemo is that he doesn’t have to shave anymore!
Wednesday, May 14, 2003 11:45 PM CDT Well, there was a big change in Bob today, he was feeling MUCH better. He was arguing with everyone! He had a lot of energy. He got George’s platelets today. (Maybe that’s what did it to him!) He wasn’t throwing-up today, so he liked that.
Bob’s neck is infected from when he pulled the catheter yesterday. They are giving him different antibiotics to treat it. I took a picture of it! I also took some pictures of Bob riding his bike. I’ll post them as soon as I get my new printer. (The memory card reader broke; HP is sending me a new printer!)
I noticed Bob looks thinner, his face isn’t as round. I think he’s lost weight from the diuretics and from not eating. He was on steroids and a drug that caused him to gain weight before. So now he may come home from the hospital with a new shape!
Thanks again to everyone who signed Bob’s guest book. He really enjoys hearing from everyone!
Just found out they are going to change the catheter because of the infection.
Tuesday, May 13, 2003 10:47 PM CDT Bob had a bad day today.
He got his catheter tangled last night. He accidentally pulled it, so now it hurting him. The nurses gave him morphine for the pain, but it still hurts. They took x-rays and cultures to see if it’s infected. They may have to take it out and put it in another location. We’ll know the results tomorrow. I know Bob isn’t looking forward to that.
My parents were at the hospital most of the day. Dad got Bob to walk a little, twice today. The nurses are giving Bob a hard time because he is suppose to sit up in his chair, but Bob’s too tired so he lies in the chair. He’s not doing his lungs any good unless he sits up. He did ride the bike 3 miles today. He’s still not eating, so he’s getting nutrition through his IV. He's running a fever of 100.2 we hope he doesn't have an infection. We'll know more tomorrow.
Monday, May 12, 2003 10:28 PM CDT Bob slept most of the day today! He’s very tired. He was throwing-up all last night, and he was throwing-up today too. He did ride the bike for 5 miles though and took a walk around the hall.
Bob’s white cell count is at 0. Normal is 4.8 – 10. Having no white cells means he’s at risk of infections, that’s why they give him a lot of antibiotics. He’s very run-down, the nurse said he’ll feel like that for at least another week. Marc brought him some videos, but Bob’s too tired to watch them.
My friend George donated platelets for Bob today. George said it was a piece of cake to donate, he enjoyed the rest! (George must be working too hard!) THANK YOU GEORGE!!
Sunday, May 11, 2003 11:14 PM CDT HAPPY MOTHER'S DAY!!
(Remember...to all those expecting moms, please donate your newborn's umbilical cord)
Bob was sitting in his chair (more like laying) when I got there this evening. He's very tired and very bored. He doesn't have an appetite. He did ride the bike 5 miles again today. He didn’t sleep well last night; he said he spent the night throwing-up.
THANK YOU to my friend George D. who’s donating his platelets tomorrow for Bob!
Saturday, May 11, 2003 11:14 PM CDT Bob’s not eating; he says he doesn’t have an appetite. He is too tired to walk, but he did ride the bike 5 miles. He’s very tired and bored, he can’t wait to get home.
He’s still getting nutrition and platelets thru his IV.
Ssturday, May 10, 2003 11:11 AM CDT Bob rode the bike today then threw-up. (I know how he hates to exercise!) He’s too tired to walk. He’s not eating, so they are giving him nutrition through his IV.
Thursday, May 8, 2003 3:49 PM CDT Bob slept well last night; he didn’t get up till 1:00 today! He was exhausted from all the medical staff coming in and out of him room yesterday. He had an echo-cardiogram, a chest x-ray, and he was put on and off oxygen. He had fluid in his lungs so they tried everything to get rid of it. He also has a breathing apparatus he uses to clear his lungs. He rode the bike 5 miles yesterday!
He rode the bike 5 miles again today! Dr Stiff wants him to walk, so he walks the hall outside his room. He has to wear a mask, gloves, and gown. He says he just feels real tired. Most of the fluid in his lungs is gone, and he's not on oxygen anymore.
He is hoping this transplant works! We'll know in the next 3-4 weeks, his blood counts should start rising, meaning the new stem cells are reproducing and making new blood.
I want to thank everyone for signing his guest book. We print them off each day and read them to him. It really lifts his spirits!
Wednesday, May 7, 2003 6:46 AM CDT YEAH!! TODAY BOB GOT HIS DONOR CELLS!!
Bob got his cord blood cells today at 10:30 AM!! It was a tiny little bag of blood. Bob’s blood type is O positive, the cord blood was type A, eventually Bob’s blood will change to type A.
Bob didn’t sleep well last night. He had difficulty breathing, so they gave him oxygen. This morning before they gave him the cord blood he got Benadrill (sp?), it made him very tired. He could barely stay awake for the infusion. It took all of 15 minutes! He needed rest, so my family and I had lunch. When I returned to the room, I could hear all kinds of noise. I walked in and saw Bob on the bike with his oxygen mask still on! It’s amazing how he pushes himself! He really has to fight in order to stay alive.
I made an appointment for Friday to harvest my platelets, so I can donate them to him. It will take about 1 hour and 40 minutes. Bob will need platelets and blood transfusions for the next 3 – 4 weeks. If anyone is interested in being a platelet or blood donor for Bob you can email me. Click on the mailbox below.
Again…THANK YOU to all the mothers who donate their newborn’s umbilical cords!!
Tuesday, May 6, 2003 9:09 PM CDT Yeah!! Today was Bob’s last day of chemo!!
He’s glad to be over it. He felt pretty good today. He even rode the bike 5 miles, and ate some food. (It will take about 10 days for the chemo side affects to go away.)
He said it’s hard for him to fall asleep even though he’s tired, but I hope he sleeps well tonight, because tomorrow is the BIG day when Bob gets his donor cord blood cells!!
PS. I added some photos to the photo album!
Monday, May 5, 2003 5:32 AM CDT It's Cinco de Mayo, that means it's Bob Birthday!
HAPPY BIRTHDAY BOB!!!
Bob was feeling better this morning; he rode the bike a little. By this afternoon he wasn’t feeling very good. It’s difficult for him to breathe sometimes. He’s very fatigued. The chemo has made his skin pink, so now he looks like he’s been somewhere warm on vacation!
We celebrated Bob’s birthday today with a chocolate cake. Mom and Dad brought the balloons. Since Bob’s immune system is weak, he can’t have flowers or plants in his room. I took some pictures today. I will post them tomorrow.
Sunday, May 4, 2003 12:40 AM CDT Some people don’t understand what an umbilical cord blood transplant is, so I will try to explain.
Blood cells are retrieved from a newborn’s umbilical cord and placenta, frozen and stored. The blood is dripped through an IV into a patient whose own immune system has been temporarily obliterated by chemotherapy. In effect, it is a transplant of the immune system. First they bring you near death, and then they bring you back to life with new cells.
The process is similar to bone marrow transplants in that a donor’s cells are used to stimulate the growth of new blood cells. In a bone marrow transplant the donor cells come from the donor’s marrow. In a cord blood transplant the donor cells come from the umbilical cord. Like bone marrow, umbilical cord blood is rich in blood stem cells – the cells from which all types of blood cells evolve.
Newborns have highly tolerant immune systems-in other words, when faced with infection, they don’t fight back as vigorously as adults or even older babies. Its nature’s way of preserving the species, because a more developed immune system would cause the fetus to reject the mother in utero and be born deathly ill. For reasons scientists cannot explain, the “more primitive” cord blood cells are strong enough to fight cancer but weak enough not to trigger graft-versus-host disease (GVHD) - in which the body destroys itself while trying to kill the intruder-as readily as bone marrow. And while many leukemia patients die waiting for an exact bone marrow transplant, cord blood cells are more adaptable and thus a miss-match can be used. Bob couldn’t find a matched bone marrow donor, but Bob’s donor cord blood is a 4 out of 6 match.
Bob will get 6 days of chemotherapy, which will destroy his immune system. He is in the Bone Marrow Transplant Unit which is an isolation unit. Because the patients are at risk of infection, a mask has to be worn when we enter his room, we also have to wash our hands, and disinfect anything we bring to his room.
On the 7th day (Wednesday, May 7), Bob will get his donor blood cells. They will be infused into his blood stream through his IV. We then wait for the process of the stem cells to engraft in his marrow and begin producing new blood cells. This can take 3-4 weeks. In the mean time he will be given blood and platelet transfusions, and multiple antibiotics to prevent infections. He also will be given anti rejection drugs so his body won’t reject the new stem cells. He’ll probably be in the hospital for 6 - 8 weeks.
Once he is released from the hospital, he’ll be in isolation in his home for approximately 2 months. His follow-up will continue on an out-patient basis, going to the Medical Center 2 to 3 times a week. The length and nature of the recovery period varies from patient to patient. It may take a year of more before a transplant survivor is well enough to resume a normal routine and return to work.
To find out how you can be a bone marrow donor or to learn how you can donate your newborn’s umbilical cord, call the National Marrow Donor Program 800-MARROW2, or visit their website at http://www.marrow.org
THANK YOU TO ALL THE BONE MARROW AND CORD BLOOD DONORS!!!
Sunday, May 4, 2003 10:56 AM CDT Bob is doing better this morning. He got out of bed and actually rode the stationary bike that's in his room. He had to take a nap after that ride!
Saturday, May 3, 2003 10:45 PM CDT Bob was in bed all day. He had a bad reaction to the chemo. He had a fever of 104, Marc put ice packs on him and his temperature came down to 98. His blood pressure dropped also, so he couldn’t stand up. He got 2 units of blood, he also had the chills. This evening when they started the chemo they reduced the rate it was infused, he was better able to tolerate it. All in all, it was a rough day for him.
Friday, May 2, 2003 11:19 PM CDT Bob slept well last night. He got more chemo today. They had to stop it, because he’s running a fever. They gave him Demerol and Tylenol; Mom said he was “out of it”. I don’t think he’ll remember what he said to her!
Father Dan Carroll of Mt. Carmel High School will offer tomorrow's mass for Bob. Thank You Father Dan!!
Thursday, May 1, 2003 10:56 PM CDT We got the results of the biopsy, his disease is progressing. After much deliberation, Bob decided to start the transplant tonight. They started him on Carmustine (BCNU). My Mom & Dad and I were there all day. Marc and his girl friend, Star came by in the evening. Dr. Stiff came by and talked with Bob about the risks of the transplant.
Bob’s will to live gave him the strength to make the extremely difficult decision to proceed with the transplant. His is one strong guy! We are proud of you and wish you all the strength and courage through your transplant.
Wednesday, April 30, 2003 9:46 AM CDT Bob was admitted to the hospital this morning at 7am.
THANK YOU!!! to the mother who donated her newborn's umbilical cord.
The total number of cells in Bob's donor cord is 121 x 10(7)
The number of CD34 cells is 9.6 x 10 (6)
Mom and Dad took Bob to the hospital today. Bob got a catheter put in his neck, this is where they will administer the chemo. The procedure was extremely painful! He said it was the worst pain he’s been through, it was like having a burning hot rod put in his neck, he couldn’t turn his head, lift his arm, or talk. Ouch!!! They gave him morphine, but that didn’t work so they gave him more. He was “out of it” for awhile. He also had an EKG, a bone marrow biopsy, and a chest x-ray. It was a long, painful day.
I came by the hospital after work. Bob was sleeping. He woke-up and ate a little. We watched the "Bachelor". Bob said only girls would watch that show! He fell asleep again, after some ativan and darvon. (I think it was the Bachelor that put him to sleep!)
Tuesday, April 29, 2003 4:09 PM CDT Bob will be admitted to Loyola University Medical Center for his cord blood stem cell transplant on Wednesday, April 30 at 7am. We will post as we learn more.
Click here to go back to the main page.
----End of History----
|
|
