This post has been a couple months in the planning. We are still here and kicking... just not as high.
In my last post we were elated to the fact that the essential oils we were using seemed to be working. Stevan's M-spike was non-existent. He felt good and was doing. However since then, there have been some major issues that have arisen.
Stevan had some problems with his collar bone at the end of Sept. He felt like maybe he had broke one when he was rolling a cedar log out of a bucket on a tractor. After several weeks, he finally went to a doctor and got an X-ray to show that it was broken... then he started complaining about his other collar bone. Back to the doctor. Yep it was broken too. The doctor suggested we get an appointment with Dr Selby, Oncologist, even though we had just had labs and X-rays done two months before that showed everything was great!
BAM! The M-spike was back to a 3.1 on Oct 16, when Stevan went to see Dr Selby. By this time Stevan was having some other serious symptoms, incontinence, pain wrapping around from his back to his groin area, and swelling in the groin area. Dr Selby immediately sent Stevan to be admitted to OU Medical Center for an full body X-ray and MRI of his spine to see what was going on, and later performed a CT scan. They found a mass pressing on his vertebra in his lower back pressing small bone shards into the spinal cord. They immediately began radiation, starting with the old block kind and then changed to a new kind of radiation that is pencil lead thin to only target the problem areas and protect the spinal cord. He spent two weeks in the hospital and then came home Oct 30th with the understanding he would have an appt to follow up and continue radiation on his right hip in Paris, Tx, which the oncology team at OU was also concerned about. They were afraid it was going to break.
Stevan finally got into Paris Oncology and began radiation on his sternum Nov 10th. When he was at OU in Oct they told us there was a quarter size hole in his sternum but was now the size of a softball and was now causing a lot of pain and the doctor in Paris wanted Stevan to be more comfortable. Nov 17, the labs showed that his hemoglobin was at a 6.7 and he would be getting 3 units of blood the next day. On Nov 20th, his hemoglobin was up to 8.9, not good but better (the range should be 14-18). They also said that they would stay on top of it and watch it.
Stevan and I spent the week of Thanksgiving up in the hills hunting. The first of the week we had the kids. Wednesday, Stevan's sister Cherl and her other half, Will came up from Mississippi and stayed till Friday with us. Then one of our friends son, Kyle, came up on Friday and spent the night with us.
Overall, not productive in hunting but relaxing and enjoyed the time out side with God's creation.
After Kyle left on Saturday, we decided to load a few things up and take home that afternoon. We should have done this before Kyle left. Stevan asked me to load up one of the 4-wheelers on the small trailer. Long story short, I had problems loading it and it ended up flipping over on top of me, landing me in the ER that evening with a severely jammed left pinky and a broken right pinky. I'm thankful it was me and not Stevan that was on the 4-wheeler. I was able to get out of the way faster than he would have been able to. I was lucky that is all that happened.
Sunday, Stevan's brother, Bill came up and helped us load the rest of the camping stuff. What would have taken all day, only took about two hours with his help.
Thursday, Dec 4, we came to OKC for Stevan's follow up appointments with Dr Herman, Radiologist, and Dr Selby, Oncologist. When he arrived at Herman's office, the nurse noticed that Stevan had blood coming from a his nose. They called Selby's office and they ordered labs which they were able to determine his hemoglobin was at a 5.9, dangerously low. Selby's office ordered us to go to the ER at OU Medical and have them give him another blood transfusion. When we got to the ER, we got in the fastest we ever have, 3 minutes, we didn't even sit down. Within an hour, they had us a room upstairs.
They gave Stevan 4 units of plasma to help his blood to clot. They then began to give him 3 units of red blood over night. He was having sever pain in different areas of his body, so they began to try and see what was going on by scheduling MRIs for those areas. After him spending several days in OKC he was released with nothing really resolved.
The one thing that was discussed was the fact that radiation was not working. It was simply hitting a couple of spots at a time and managing pain. I spoke with one doctor that came to evaluate Stevan and she agreed that the radiation was not working, that his treatment had to be changed.
I will post more when we have more information...
Us before Myeloma
Celebrating our 5 year Anniversary a few days early. Wow! We've both changed over the past few years.
Showing posts with label M-spike. Show all posts
Showing posts with label M-spike. Show all posts
Wednesday, December 10, 2014
Sunday, August 25, 2013
End of Summer- Fall is here!
Yeah I know... It's been too long since I've posted. So let me catch you up on how everthing is and whats been going on. I'll be brief.
We have had a great summer. It began with Stevan going to see Dr Selby at the end of May. We discussed and decided to have Stevan go on maintance cancer medicine. He start that at the end of July. This time around it upset his stomach. He had been nauseous most of the time. I upped his nausea medicine and that has seemed to help.
I had a pretty big garden this summer. Lots of tomatoes, cucumbers, several kinds of squash and peppers. I was able to sell our extras at our local farmers market. It was nice to have a bit of extra cash to put back. Since school started, I've been giving away okra, the remaining small tomatoes and peppers that are still coming off. This summer I was able to can tomatoes, stewed tomatoes, plum jam, cinnammin spice fig jam, and jalapino jam and freeze corn and squash. Since school started, I've been giving away okra, the remaining small tomatoes and peppers that I've finally gotten a few nice pickings of greenbeans, enough to can a couple of dozen quarts for us to enjoy over the winter months. I love homegrown foods, better than store bought. It's a lot of work but so worth the reward latter down the road.
We chose to take that extra money I had put back and take the kids to Branson for a couple of days before school started for them, to make some memories and have a bit of fun. The first night we went to the Dixie Stampeed, which I had had not seen Dustin smile and laugh that much in a long time. We then spent the next day at Silver Dollar City. We were tired and worn out, but had a great time.
We went back to Dr Selby last month. Stevan's blood work revealed that Stevan's protein levels were up. Back in April his M-spike had been .3, now it is at 1.1, not good! His Kappa Light Chain went from 38.94 to 190.41! And his kappa/lambda,free is now at 23.08 (normal is .26-1.65ratio). Yes the doctor was concerned as we're we after we had a few days to process it all.
Selby discussed a couple of options with us, go back on his belly shots of Velcade, or upping his dose of Revlimid or upping his dose of Revlimid and adding Dexamethasone back to the mix. After looking at throwing pros and cons and the fact that he had responded quite well to the mix of Dex and Revlimid in the past, we chose the latter drug protocol.
Stevan's been on it now for a month and seems to be doing well. The nausea is gone, thanks to Dex, which does keep him up on Monday and Tuesday nights, so he takes a strong sleeping pill, which nocks him out til morning. The Dex has givin him his energy back. He doesn't seem to be sleeping as much as before. There are days he takes a nap, like on the weekends, but those are usually the days I take one with him because we are both exhausted!
The first quarter of school ended for me this past week. Wow, how time flies! I just realized that I hadn't posted since April. Those of you who know us personally know that the next month and a half will be deer season for us, so we will spend a lot of times out in the woods and mountains north of us. Next week is youth hunt for the kids. And then the next two weekends will be muzzleloading season. Stevan and I love this time of year, spending time with family, God and admiring his beautiful creation around us. Stevan has always said he feels close to God out in the woods. I have to agree with him. I spend a lot of my time sitting and talking to Him and telling him how thankful I am. God has been good to us and has taken care of us throughout this year. There will be many things to be thankful for this year at Thanksgiving.
Thank you for your thoughts and prayers. We have so many friends that we hold near and dear to our hearts, sometimes words are not enough, but we do what we can to repay your kindness.
Saturday, April 20, 2013
Can You Answer The Question?
So what do you get when you have had cancer for two years, a round of radiation to you arm, Revlimid for nine cycles, a stem cell transplant, bone infection, eight weeks of antibiotics, a soft tissue mass in your eye socket, full cranium radiation, and finally four rounds of Velcade? Yes a bald head! But there's a bonus too....
Thursday, we went to OKC to visit with Dr Selby, hematologist and SCT doctor. We met with his PA first for her to gather all of the information on Stevan. The typical, aches, pains, symptoms, sleep patterns, nauseous, and medicines. Good news, his M-spike in January was a .6 and when we last saw Dr Selby at the end of February, it was .3. Yeah it dropped! They took more blood today to see what it is now, three weeks after the last dose of Velcade.
Stevan has been sleeping a LOT more over the last three weeks too. They think because he's not taking his Devil Dex (Dexamethasone), which gives him energy and does keep him up for a few days after his once a week dose. He's also been nauseous after eating most meals. Yes, he has nausea medicine but he won't take it unless I make him. He usually eats lunch with friends during the week which then makes his stomach upset. Then at night he doesn't want to eat anything because his stomach doesn't feel good. He'll resort to eating three to six oranges for dinner. Apparently the acid from the oranges doesn't hurt his stomach but settles it. Selby want to put him an enzyme that his pancreas might not be producing, which is why he could still be having diarrhea. They were going to give us some samples to try before getting a script to check it OU and see if it works, but we forgot to get them before we left. I spoke with the nurse on Friday, and they are going to mail him some to try.
Stevan has been experiencing some sharp pain in his head, behind his left eye, where the mass was and where they did radiation. They think this is just from the radiation, but they want to do an MRI of his head to see what's going on. They will try to schedule that in a couple of weeks and have a follow up appointment with Selby to discuss lab results and future treatment options.
Stevan's been having some pain in his lower left leg when he's sitting in his chair or in bed. Selby wants to order an image of his leg to check and make sure it's not Myeloma causing problems. Other possible causes is peripheral neuropathy or restless leg syndrome. There is no swelling so that's a positive note. By the time we got his blood drawn and headed to radiology, it was well after 5:30pm and they were closed for the day. So when I called Friday morning to see what that means. They decided to send him to Paris Imaging Center to get the X-ray done, so they can have the results when we go see Selby again.
So to answer the original question... Thursday early morning, Stevan said that he brushed off what he thought was a spider crawling on his face then his arm. When he got up, he told me that he thought it had bit him on his right side about six inches or so below his under arm. I didn't pay much attention to it but told him to ask Selby. At the end of his exam and visit, Stevan brought up the bite. Selby looked at it and asked, if he had had the chicken pox. Stevan said no he didn't. Selby said, I bet you did but you didn't know it. So be checked the computer to see what some test they had performed before his stem cell transplant that measured his antibodies. (I got to say how cool is that they can test to see what disease or illness you have been exposed to just by looking at your blood. I never knew this existed! Cool!) Sure enough, Stevan had been exposed to the chicken pox, had a marker of 2.8. Selby then told him, "it looks like you have shingles". With all that Stevan has gone through, even though he says he feels fine on some days, his immune system is extremely compromised and weakened. So after this last round of Velcade, we stopped his Dex and his Acyclovir which was 400 mg twice a day. The acyclovir is what prevents viruses. So now Stevan is back on acyclovir not twice a day but five times a day for seven days then back to his regular dose. They went ahead and took bacteria and viral scrapes for cultures to make sure. We asked Selby what this would mean for Stevan. He said it is quite common for cancer patience to get shingles and with him getting it at a young age, he probably won't have as hard of a time with it. We can only hope and pray.
God will get us through this speed bump. He does have the whole world in his hands.
Thursday, we went to OKC to visit with Dr Selby, hematologist and SCT doctor. We met with his PA first for her to gather all of the information on Stevan. The typical, aches, pains, symptoms, sleep patterns, nauseous, and medicines. Good news, his M-spike in January was a .6 and when we last saw Dr Selby at the end of February, it was .3. Yeah it dropped! They took more blood today to see what it is now, three weeks after the last dose of Velcade.
Stevan has been sleeping a LOT more over the last three weeks too. They think because he's not taking his Devil Dex (Dexamethasone), which gives him energy and does keep him up for a few days after his once a week dose. He's also been nauseous after eating most meals. Yes, he has nausea medicine but he won't take it unless I make him. He usually eats lunch with friends during the week which then makes his stomach upset. Then at night he doesn't want to eat anything because his stomach doesn't feel good. He'll resort to eating three to six oranges for dinner. Apparently the acid from the oranges doesn't hurt his stomach but settles it. Selby want to put him an enzyme that his pancreas might not be producing, which is why he could still be having diarrhea. They were going to give us some samples to try before getting a script to check it OU and see if it works, but we forgot to get them before we left. I spoke with the nurse on Friday, and they are going to mail him some to try.
Stevan has been experiencing some sharp pain in his head, behind his left eye, where the mass was and where they did radiation. They think this is just from the radiation, but they want to do an MRI of his head to see what's going on. They will try to schedule that in a couple of weeks and have a follow up appointment with Selby to discuss lab results and future treatment options.
Stevan's been having some pain in his lower left leg when he's sitting in his chair or in bed. Selby wants to order an image of his leg to check and make sure it's not Myeloma causing problems. Other possible causes is peripheral neuropathy or restless leg syndrome. There is no swelling so that's a positive note. By the time we got his blood drawn and headed to radiology, it was well after 5:30pm and they were closed for the day. So when I called Friday morning to see what that means. They decided to send him to Paris Imaging Center to get the X-ray done, so they can have the results when we go see Selby again.
So to answer the original question... Thursday early morning, Stevan said that he brushed off what he thought was a spider crawling on his face then his arm. When he got up, he told me that he thought it had bit him on his right side about six inches or so below his under arm. I didn't pay much attention to it but told him to ask Selby. At the end of his exam and visit, Stevan brought up the bite. Selby looked at it and asked, if he had had the chicken pox. Stevan said no he didn't. Selby said, I bet you did but you didn't know it. So be checked the computer to see what some test they had performed before his stem cell transplant that measured his antibodies. (I got to say how cool is that they can test to see what disease or illness you have been exposed to just by looking at your blood. I never knew this existed! Cool!) Sure enough, Stevan had been exposed to the chicken pox, had a marker of 2.8. Selby then told him, "it looks like you have shingles". With all that Stevan has gone through, even though he says he feels fine on some days, his immune system is extremely compromised and weakened. So after this last round of Velcade, we stopped his Dex and his Acyclovir which was 400 mg twice a day. The acyclovir is what prevents viruses. So now Stevan is back on acyclovir not twice a day but five times a day for seven days then back to his regular dose. They went ahead and took bacteria and viral scrapes for cultures to make sure. We asked Selby what this would mean for Stevan. He said it is quite common for cancer patience to get shingles and with him getting it at a young age, he probably won't have as hard of a time with it. We can only hope and pray.
God will get us through this speed bump. He does have the whole world in his hands.
Friday, August 3, 2012
Home Day +72
Yesterday was a day for us to relax and catch up on things. I want to follow up with what happened to lead Stevan to be released.
Stevan felt so much better on Wednesday morning. He had not ran a fever since Monday night. He had not had his Vancomycine since Sunday night. Dr White had ran a bone scan and saw that the infection had been responding to the antibiotic and looked better than before. His Potassium was on the low side, so they gave him some per IV and in a couple of pills and then was able to have his picc line removed. They sent the end of it to the lab to check for bacteria or infection.
They have increased his hydrocortisone in the AM from 20mg to 60mg and the PM from 10mg to 30mg for the next three days and then go to 30mg in the AM and 15mg in the PM for the next 30days. He will have an appointment with an endocrinologist on Aug 24 to talk to us about his adrenal insufficiency and how to continue to treat it.
Dr Holter came to visit Stevan and examine him. She said that she wants to wait to do the transplant for at least a month or two. She said that his kidneys are on their way back to being normal, but he must hydrate himself well with water to clean them out and help them to heal.
Before we left the hospital, I asked for copies of the blood work since we were there on Monday. Last night I got to looking at them and to my surprise I found out something that some of my MM readers had commented on and told us to watch for. I had posted before that Stevan's M spike on June 20th was Monoclonal IGA Kappa #1 = .5 and #2 = .1. On last Friday's visit, July 27, his blood test showed his M-spike to be .2 with a small M-skike noted in beta/gamma region. So what does this mean? His M-spike is still dropping and he's not on any maintance therapy.
With all of this combined, we feel like this is an answer to prayers. We hope that in a couple of months maybe his M-spike will be at zero. Definately something to look forward to.
They have increased his hydrocortisone in the AM from 20mg to 60mg and the PM from 10mg to 30mg for the next three days and then go to 30mg in the AM and 15mg in the PM for the next 30days. He will have an appointment with an endocrinologist on Aug 24 to talk to us about his adrenal insufficiency and how to continue to treat it.
Dr Holter came to visit Stevan and examine him. She said that she wants to wait to do the transplant for at least a month or two. She said that his kidneys are on their way back to being normal, but he must hydrate himself well with water to clean them out and help them to heal.
Before we left the hospital, I asked for copies of the blood work since we were there on Monday. Last night I got to looking at them and to my surprise I found out something that some of my MM readers had commented on and told us to watch for. I had posted before that Stevan's M spike on June 20th was Monoclonal IGA Kappa #1 = .5 and #2 = .1. On last Friday's visit, July 27, his blood test showed his M-spike to be .2 with a small M-skike noted in beta/gamma region. So what does this mean? His M-spike is still dropping and he's not on any maintance therapy.
With all of this combined, we feel like this is an answer to prayers. We hope that in a couple of months maybe his M-spike will be at zero. Definately something to look forward to.
Saturday, July 28, 2012
"I'm sick" Day +66
Everything was going so well with Stevan's transplant... now it seems like everything is going wrong.
Stevan did not feel good all day and has finally admitted that he is sick. We visited the Watermelon Festival in Valliant this morning before it got hot. And though we didn't stay very long, he threw up before getting his lunch today. He felt better afterwards, but he slept most of the afternoon. His stomach continues to be upset and around 9pm he began running a fever again... 100.3 He took two Tylenol and will be headed to bed soon. We think it best that he stay home tomorrow and not join us for church.
Yesterday was another long day in OKC. We started with an appointment with a PA, Natalie at the hospital. She was to give Stevan the look over and talk to him since he's been running a fever in the evenings, anywhere from 99.2 to 103 since Sunday night. She said that this could be a sign of the Vancomycin is not working on the bone infection. This means that the rod in Stevan's arm will have to be taken out in order for the infection to go away. Stevan has an appointment on Monday with Dr White, the orthopedic oncologist who placed the rod. He will make the final determination about the rod. If the rod is not pulled and the infection is not taken care of, it could result in Stevan loosing his arm or his life. He'll take the surgery!
We also discussed with her about getting a tandem transplant. We asked why Stevan was tested on his M-spike so soon and not wait til day 100. She said that the latest research is showing that labs taken at 4 to 6 weeks, if there a trace of M-spike it indicates they should do another transplant (tandem). Their thought is to continue to knock it back down further. She gave us a copy of Stevan's labs showing his M-spike over the past year so we could see the trend. (I have no idea what it all means or why the blood labs are different than the urine samples. This is something we plan on asking Dr Holter/Selby, unless some of my other MM readers want to help us out here.)
Blood labs
6/15/11 Two Monoclonal bands are observed in the beta/gamma region. Band 1 = 4.6 g/dL; Band 2 = 1.4 g/dL Markedly elevated total protein level observed along with two monoclonal bands, the strongest migrating in the beta-gamma interface region. The second monoclonal band is less intense and slightly more cathodic.
10/3/11 Two monoclonal bands are observed in the beta/gamma region Band 1 = .8 g/dL; Band 2 = .2 g/dL
1/12/12 M-spike not observed. Decreased total protein level observed along with a decrease in the gamma fraction. The pattern is consistent a "hypogammaglobulinemia" pattern. No monoclonal peaks are observed.
6/20/12 Monoclonal IGA Kappa #1 = .5 g/dL ; #2 = .1 g'dL Immunofixation shows IgA monoclonal protein with kappa light chain specificity.
Urine Sample
6/15/11 UR Protein mg/dl 6.3; UR Protein 24 hr 146.1; M-spike not observed, The urine protein electophoresis pattern reflects low molecular weight constituents found in normal urine. No proteinuria or anomalous protein is observed.
10/3/11 UR Protein mg/dl 8.9; UR Protein 24 hr 221.3; UPE shows atypical Gamma. Suggest serum and urine IFE, if clinically indicated.
1/12/12 UR Protein mg/dl 16.9; UR Protein 24 hr 373; Immunofix urine: Bence Jones Protein positive; kappa type. M-spike 11.8; M-spike 24 hr 44.0 Apparent monoclonal protein. Suggest urine IEP for further evaluation, if clinically indicated.
7/1/12 UR Protein mg/dl 13.6; UR Protein 24 hr 193.3; M-spike not observed. No monoclonality detected.
Natalie said that she would make sure that we get to speak with Dr Holter or Dr Selby on our next visit on Aug 15 to be able to ask more questions and have them to be more detailed in why they think Stevan needs to have a tandem.
Stevan then had his pulmonary test done to see how his lungs were doing. He did have some difficulty with this test. He realized that he doesn't have as much stamina as before the stem cell. He does get out of breath quite easily when he does any type of exercise. The tech told him to workout and do more cardio to help build his stamina up... Yeah right.
His last test was to look at his heart, specifically at his left side. All seemed well. It was a different kind of test than what he had done before. This time they took a sample of his blood and infused it with something for about 20 minutes. They then gave it back to him and took a picture of his heart pumping. It over-laid multiple pictures on top of themselves. The tech said that she would later be able to dissect his heart on the computer and move it around. Cool! The things they are able to do these days.
Last thing was to go get blood drawn for labs again. Not sure what tests are being done this time. Dr Holter had ordered some as well as Dr White. I'm sure we will get more information on Monday. Dr White, Orthopedic Oncologist, will see Stevan at 11am and hopefully we will have more information to pass alone about his arm and the rods. We are going to pack an overnight bag just in case he's still running fever and they decided to admit him. They may decide to pull the rod out Tue or Wed... we can only hope.
Stevan did not feel good all day and has finally admitted that he is sick. We visited the Watermelon Festival in Valliant this morning before it got hot. And though we didn't stay very long, he threw up before getting his lunch today. He felt better afterwards, but he slept most of the afternoon. His stomach continues to be upset and around 9pm he began running a fever again... 100.3 He took two Tylenol and will be headed to bed soon. We think it best that he stay home tomorrow and not join us for church.
Yesterday was another long day in OKC. We started with an appointment with a PA, Natalie at the hospital. She was to give Stevan the look over and talk to him since he's been running a fever in the evenings, anywhere from 99.2 to 103 since Sunday night. She said that this could be a sign of the Vancomycin is not working on the bone infection. This means that the rod in Stevan's arm will have to be taken out in order for the infection to go away. Stevan has an appointment on Monday with Dr White, the orthopedic oncologist who placed the rod. He will make the final determination about the rod. If the rod is not pulled and the infection is not taken care of, it could result in Stevan loosing his arm or his life. He'll take the surgery!
We also discussed with her about getting a tandem transplant. We asked why Stevan was tested on his M-spike so soon and not wait til day 100. She said that the latest research is showing that labs taken at 4 to 6 weeks, if there a trace of M-spike it indicates they should do another transplant (tandem). Their thought is to continue to knock it back down further. She gave us a copy of Stevan's labs showing his M-spike over the past year so we could see the trend. (I have no idea what it all means or why the blood labs are different than the urine samples. This is something we plan on asking Dr Holter/Selby, unless some of my other MM readers want to help us out here.)
Blood labs
6/15/11 Two Monoclonal bands are observed in the beta/gamma region. Band 1 = 4.6 g/dL; Band 2 = 1.4 g/dL Markedly elevated total protein level observed along with two monoclonal bands, the strongest migrating in the beta-gamma interface region. The second monoclonal band is less intense and slightly more cathodic.
10/3/11 Two monoclonal bands are observed in the beta/gamma region Band 1 = .8 g/dL; Band 2 = .2 g/dL
1/12/12 M-spike not observed. Decreased total protein level observed along with a decrease in the gamma fraction. The pattern is consistent a "hypogammaglobulinemia" pattern. No monoclonal peaks are observed.
6/20/12 Monoclonal IGA Kappa #1 = .5 g/dL ; #2 = .1 g'dL Immunofixation shows IgA monoclonal protein with kappa light chain specificity.
Urine Sample
6/15/11 UR Protein mg/dl 6.3; UR Protein 24 hr 146.1; M-spike not observed, The urine protein electophoresis pattern reflects low molecular weight constituents found in normal urine. No proteinuria or anomalous protein is observed.
10/3/11 UR Protein mg/dl 8.9; UR Protein 24 hr 221.3; UPE shows atypical Gamma. Suggest serum and urine IFE, if clinically indicated.
1/12/12 UR Protein mg/dl 16.9; UR Protein 24 hr 373; Immunofix urine: Bence Jones Protein positive; kappa type. M-spike 11.8; M-spike 24 hr 44.0 Apparent monoclonal protein. Suggest urine IEP for further evaluation, if clinically indicated.
7/1/12 UR Protein mg/dl 13.6; UR Protein 24 hr 193.3; M-spike not observed. No monoclonality detected.
Natalie said that she would make sure that we get to speak with Dr Holter or Dr Selby on our next visit on Aug 15 to be able to ask more questions and have them to be more detailed in why they think Stevan needs to have a tandem.
Stevan then had his pulmonary test done to see how his lungs were doing. He did have some difficulty with this test. He realized that he doesn't have as much stamina as before the stem cell. He does get out of breath quite easily when he does any type of exercise. The tech told him to workout and do more cardio to help build his stamina up... Yeah right.
His last test was to look at his heart, specifically at his left side. All seemed well. It was a different kind of test than what he had done before. This time they took a sample of his blood and infused it with something for about 20 minutes. They then gave it back to him and took a picture of his heart pumping. It over-laid multiple pictures on top of themselves. The tech said that she would later be able to dissect his heart on the computer and move it around. Cool! The things they are able to do these days.
Last thing was to go get blood drawn for labs again. Not sure what tests are being done this time. Dr Holter had ordered some as well as Dr White. I'm sure we will get more information on Monday. Dr White, Orthopedic Oncologist, will see Stevan at 11am and hopefully we will have more information to pass alone about his arm and the rods. We are going to pack an overnight bag just in case he's still running fever and they decided to admit him. They may decide to pull the rod out Tue or Wed... we can only hope.
Thursday, May 24, 2012
Still Hanging in There Day +1
I don't whether to be relieved or scared. Stevan is still doing well even though his numbers are still going down. He has not been sick, no diarrhea, and no nausea. This was really an uneventful day for us. He slept, or tried to sleep most of the day. I had a hard time getting him to get up take his daily shower and walk until after 6 tonight. When he did walk he did more than I expected. Yesterday he walked the "track" three times. I told him he should do at least one more than that. He made 10 rounds.
On Monday a stool sample was taken for testing. He tested positive for Vancomycin Resistant Enterococci, VRE for short. This is germs found in the bowel that is resistant to the antibiotic Vancomycin, that is used to treat the infection caused by Enterococci. They don't know how he got it, but people who are at risk for getting VRE are those who have been in an intensive care unit, are sick with a long-term illness, have been on many different types of antibiotics, have had major surgery or had an organ or bone marrow transplant. This means that he is in isolation to prevent VRE from spreading to other patients. Nurses coming into his room now have to wear gowns and gloves. Visitors are to report to the nurses station for directions on what to do to enter his room now. I was told to wash my hands up to my elbow constantly. I'm to use the alcohol-based hand sanitizer coming and going from his room. The main question we had was "Is he contagious?" Answer, "NO". Its more to protect Stevan than anyone else. VRE is not spread by coughing or sneezing. It can be on your hands, and can get their from your stool or urine. It spreads by touching anything if you do not clean your hands. Hands must be washed for ten seconds or cleaned using an alcohol-based hand cleaner. It really isnt as bad as it sounds.
On to the numbers! When we asked the doctors about Stevan's M-spike results from January's bone marrow biopsy, we discovered he obtained zero. Yeah! So that is why they were pushing for him to do the transplant. Looking at his blood test results from last Thursday during pre-op and then last nights numbers here are the results.
5/17 5/24
White Cells 8.6 3.2
Red Cells 4.05 3.31
Platelets 404 244
Hemoglobin 12.6 10.4
In other medical things to report for the day... Stevan was given Neulasta today, to get his white cell back up to working, even though his numbers are not low yet. This will cause some aches and pains similar to his neupogen shots he had before his harvest. Talking to his evening nurse tonight, she said that it would be about day 7 when his numbers get down to their lowest numbers. She also said that he would be allowed to go home when his ANC, absolute neutrophil counts, is greater than 500 for 3 days. Neutrophils are a type of white blood cell that fights against infection and must be calculated by a formula. I'll be asking for this count now.
After posting pictures of Stevan the last couple of days, I've had several people ask why he was so swollen. Last night we discovered he had gained 18 lbs in 24 hours, due to all of the fluids he was getting. Even the nurses were surprised at how much he was holding. I asked the doctors this morning about his bloating. They decided to give him a one time shot of lasix to help flush him out. LOL... he got up every 30 to 45 minutes for 5 hours to relieve himself. He just got weighed tonight and he has lost 10 lbs since last night. The lasix are doing their job.
All is going well which proves the prayers are working. Thank you!
On Monday a stool sample was taken for testing. He tested positive for Vancomycin Resistant Enterococci, VRE for short. This is germs found in the bowel that is resistant to the antibiotic Vancomycin, that is used to treat the infection caused by Enterococci. They don't know how he got it, but people who are at risk for getting VRE are those who have been in an intensive care unit, are sick with a long-term illness, have been on many different types of antibiotics, have had major surgery or had an organ or bone marrow transplant. This means that he is in isolation to prevent VRE from spreading to other patients. Nurses coming into his room now have to wear gowns and gloves. Visitors are to report to the nurses station for directions on what to do to enter his room now. I was told to wash my hands up to my elbow constantly. I'm to use the alcohol-based hand sanitizer coming and going from his room. The main question we had was "Is he contagious?" Answer, "NO". Its more to protect Stevan than anyone else. VRE is not spread by coughing or sneezing. It can be on your hands, and can get their from your stool or urine. It spreads by touching anything if you do not clean your hands. Hands must be washed for ten seconds or cleaned using an alcohol-based hand cleaner. It really isnt as bad as it sounds.
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| Stevan making phonecalls tonight. |
5/17 5/24
White Cells 8.6 3.2
Red Cells 4.05 3.31
Platelets 404 244
Hemoglobin 12.6 10.4
In other medical things to report for the day... Stevan was given Neulasta today, to get his white cell back up to working, even though his numbers are not low yet. This will cause some aches and pains similar to his neupogen shots he had before his harvest. Talking to his evening nurse tonight, she said that it would be about day 7 when his numbers get down to their lowest numbers. She also said that he would be allowed to go home when his ANC, absolute neutrophil counts, is greater than 500 for 3 days. Neutrophils are a type of white blood cell that fights against infection and must be calculated by a formula. I'll be asking for this count now.
After posting pictures of Stevan the last couple of days, I've had several people ask why he was so swollen. Last night we discovered he had gained 18 lbs in 24 hours, due to all of the fluids he was getting. Even the nurses were surprised at how much he was holding. I asked the doctors this morning about his bloating. They decided to give him a one time shot of lasix to help flush him out. LOL... he got up every 30 to 45 minutes for 5 hours to relieve himself. He just got weighed tonight and he has lost 10 lbs since last night. The lasix are doing their job.
All is going well which proves the prayers are working. Thank you!
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