Sitting Still

One of the hardest things for a child to learn how to do is to sit still and listen. As a child I learned to sit still and listen in church, school and at the dinner table. As an adult I have learned to sit, watch and listen while sitting in a deer blind or stand waiting for that prize buck to come along. As a child of God I have learned to sit still and listen for Gods voice and his will.

This pretty much sums up what the last two months. Stevan saw Dr White, Orthopedic Oncologist, on Aug 27. He said that Stevan looked great and his labs looked good. All of his numbers were down and indicated there was no infection in his left humorous bone.

On Sept 19, we went to see Dr Holter, his stem-cell oncologist, but she was not available, so we saw her colleague Dr Selby. We discovered that when Stevan did his 24 hour urine sample, it contained 11 grams of protein. This was an incredible amount for this sample. We also discussed his continued diarrhea, which actually prompted  Dr Selby to ask if Dr Hummer, Stevan's Endocrinologist, (saw on Aug 24) had mentioned amyloid. We told him no. (At the end of this post I have included information about amyloid.)

Dr Selby decided that it looked like Stevan had experienced a quick remission period, but now appeared that the cancer was coming back, but he wanted to do another 24 hour urine sample to make sure. When asked what might be the next course of action if it was coming back, he gave us a couple of options. He said that he might be a candidate for another stem-cell transplant if he was to do it sooner than later. Stevan told him that he didn't want to do anything until after Christmas. He said that if he wanted to wait, there was a new drug approved to treat MM, Carfilzomib, that he might be a candidate to receive. He was going to get with Dr Holter and discuss with her.

Finally on Oct 5, we visited with Dr Hummer yet again. She has diagnosed Stevan officially with an adrenal gland deficiency but still wanted to test him on his testosterone level. We mentioned amyloid to her and she said that she normally did not deal with it but it was something that should be looked into by Dr Holter. She suggested that Stevan get into a GI doctor and get a lower GI scope to look into the persistent diarrhea. This is also what Dr Selby had also mentioned when we saw him.

Oct 19, Friday, Dr Hummer called and told Stevan that his testosterone was low, which could be the cause of his low energy levels, as well as other problems such as depression, decrease in bone density and decreased muscle mass. She also said that his other test levels were strange. Some of his levels were high, and others were low... he was a "special case". If she only knew... LOL. She was going to talk to her boss and get back with us on what needed to be done next.

Stevan is feeling good most of the time. He developed a pain in his left ribs last week; thinks he pulled something while we were camping out with the kids over fall break. There is pain meds for that, as he says. He's still having trouble sleeping. I'm working on getting him into do a sleep study. I have questioned for a couple of years if he had sleep apnea and Dr Holter suspects it also. Hes ready to go deer hunting this weekend (the beginning of muzzle loading season) since he's not taking any major pills, isn't doing radiation or chemo. He's ready to sit still and watch for them to come out from their hiding places... Ok he's going out to get some sleep! LOL He says that he sleeps better in the daytime and outside (I think we have a doghouse that's empty... just kidding).

Some have asked how am I. I'm in a good place right now. I have the distraction of teaching my students and taking a graduate class. I'm finding that there is not enough hours in the day to get everything done, but its good for me to stay busy and focused on outside things. I wont lie though, I have my moments of panic and what are we going to do, but with a bit of prayer and the need to get things done, I'm back up and ready to trudge on.

We have both been sitting still, waiting. Trying to figure out what is going on. Listening for a clear voice of what to do next. Not easy waiting for answers but that is where we are at right now and why we haven't written in a while. We still don't know what is going on either, so we saw no reason to post. Honestly, I don't think the doctors know what is going on either at this point. As we have told others, no news is good news. If something bad was going on, we would let you know immediately. So I guess you could say, we don't consider what is going on as bad. We are just being called to sit still.

Thank you for your continual prayers.


More info on amyloid.
Primary amyloidosis is an acquired plasma cell disorder in which a monoclonal immunoglobulin light chain is produced in the bone marrow and usually found in the blood or urine. AL amyloidosis occasionally occurs with multiple myeloma. The amyloid fibrils in this type of amyloidosis are made up of immunoglobulin light chain proteins (kappa or lambda).The short term for this type of amyloidosis is AL, for amyloid of light chain composition. Symptoms can occur in any organ of the body and include heart failure, protein in the urine or kidney failure, enlarged liver, neuropathy or enlarged tongue. Treatment with chemotherapy has been standard; however newer agents are in clinical trials and being found effective.

Getting Tests Done Day 96

Friday we came up to OKC to meet with Stevan's new doctor, Dr Hummer, intern for endocrinology, who will be working on his adrenal gland deficiency. We got up at 3:30 this morning to get on the road for pre-lab work at 8am and then a series of blood draws after a dose of medicine to see what his adrenal gland is doing. They believe that he doesn't really have an adrenal problem, but after nine and a half rounds of Revlimid, it has his adrenal gland temporarily not working. This lab work today should tell her what's going on with it as well as if there are some other issues going on that we are not aware of.

This afternoon we meet with Dr White, Orthopedic Oncology, about Stevan bone infection issue. We are hoping they tell us that all looks good and the infection is cleared or clearing up. He will have some x-rays taken of his arm and possibly more blood work. Poor guy is always getting stuck!

School started for me last Monday. We got kids in the classroom on Wednesday. Another year has begun. Did I mention I'm also taking an online graduate math class this semester? Yeah... Like I don't have enough to do... I know. With this class and one more in the spring, I should be ready to teach college full time, if I'm given the opportunity.

Off for now.... More info when we have it.

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.

Headed Home Day +70

We are headed home right now. We will be tired by the time we get there, so I will post the details of today tomorrow. Thank you for your thoughts and prayers. God has carried us through another set of unforeseen circumstances. He is an amazing God.

Finally Day +69

Right after I posted my last post we asked the nurse to call Stevan's doctors and see if we could find out what was going on since no one had been back to talk to us. She did and we got to talk to him over the phone.

Dr Lam said that the team of doctors looked at Stevan's bone scan and it actually showed that the infection looked better. So Dr White is a little reluctant to pull the rod out since it has responded to the Vancomycine. We will need to follow up with Dr White about his arm next week. Since his Vancomycine level is so high (he has enough in his system to last five more days) they have decided not to continue it.

So what was the whole problem? They believe a combination of high level of Vancomycine and not enough Hydrocortisone in his system. Back in April, Dr Holter prescribed him Hydrocortisone for him after she learned that he still had been having diarrhea (over a year), diagnosing him with an adrenal gland deficiency. The problem is that we were never told to follow up with a Endocrinologists to explain to us how to adjust his dose when he got sick. They have increased his dose of Hydrocortisone now, which is part of why he is feeling better.

They are going to watch him over night and in the morning. If his blood levels are good tomorrow and he doesn't run a temp tonight then he will be released to go home tomorrow. He is now getting ready to eat since he hasn't been able to all day thinking they were going to operate on him.
God has taken care of us once again. Thank you for the prayers. We can now focus on a possibility of a second transplant. We still have lots of questions for the transplant team over this.

A Night Mare Of A Day Explained Day +69

Yesterday was a really bad day. I need to fill in what happened to bring us to a room here at OU Medical Center.

Sunday Stevan slept all morning, but joined us as we went to eat at our neighbors cafe for lunch. He ate a burger but said that his stomach was bothering him and was upset. We got home and I hooked him up to his medicine as always and he laided down for his nap. By 4:30pm he was running a fever, 100.2. At 6:30pm it was coming up, 100.6 and two hours later it was at 101.5. He took two Tylenol and I called the BMT Unit. I let them know what was going on and that this had been going on for a week now. She suggested that we pack up and come in right then. We told her that we were to be at Dr Whites office the next day anyway, we would wait. She said that she would make a note on his record what was going on. By 11pm it had dropped to 99.1.

We got on the road at 6am and headed to Grandma's to drop off the kids and hook him up to his morning dose of Vancomycin, but got a mile down the road and Stevan yelled stop the car. He threw open the door and puked. He said that it tasted like medicine. I gave him some Emetrol and we continued on. About five miles further, he yelled stop again, purging the rest of what was in his stomach. At this point I decided that I was not hooking him up to his medicine until the doctors told me to. I called the BMT Unit again and let them know that we were on our way and what had just happened. I gave him a 25 mg of Phenergan and we continued to OKC to see Dr White.



Only with God's strength was I able to get through yesterday.

Stevan slept the rest of the drive to OKC. He had to turn in his 24 hour urine sample and give a blood sample at the lab. They couldn't get it to draw on the first poke and on the second it was going slow (they said he was dehydrated from throwing up earlier). Before they got the comlete sample, Stevan passed out and began throwing up. He was blackout for a good bit (estimate about a minute) before coming too. The lab tech's called the medics and got him a cot but he didn't want to lay down. He was beginning to feel better by the time the medics got there and began checking him out.

I can't begin to tell you how I felt seeing Stevan passing out and throwing up... completely helpless. All I could do was hold the trashcan with one hand and try to hold him up in the chair with the other.

They were wanting to take him to the ER but he said that he had to go see Dr White and see what to do about the rod. One of the medics decided to go talk to Dr White and see if he would come check him out and help Stevan made a decision on what to do. It wasn't long after that Stevan passed out again and started throwing up again. This time he wasn't out for nearly as long. The medic that was watching him said that he was taking him regardless what he said at that point. I told the medic that there was no question, Stevan was going to the ER no matter what.

As they took him into the elevator, Dr White was coming down the hall. I walked with him downstairs to tell him what had been happening today. White caught up to Stevan and told him that he had to go to the hospital and that he would come over and check him out over there.

Stevan was admitted to the ER around noon and they began drawing blood for cultures, labs, x-ray and began an IV fluid. After the ER doctor coming in to check him out, then an orthopedic intern came in several times... By 4:45pm, the orthopedic intern came in and told us that Dr White wasn't going to see him today, but would schedule us another day to check him out and visit with him and then left. Stevan and I looked at each other and came to the conclusion that it seemed that they were about to discharge Stevan and we still didn't have any answers. I decided that this was not going to happen, he had been running fever and sick for too long.

I called Patti, the transplantt coordinator at the cancer center and told her where we were and what was going on and that we were afraid that they were going to release him and we didn't want that to happen. She told me that she would make some phone calls and see what she could do.

About 45 minutes later the orthopedic intern came in and asked if someone had come to update us what was going on. "NO." He then said that they were working on admitting him and see what was making him sick. We were relieved... we thought we were about to have the first bad experience here at OU.

A bit later Dr David Lam from the Cancer Center came in and began to tell us what had been going on behind the scenes and the results of the tests that had been done. Stevan's inflamation level was at a 154 and at an 8 tells them there is an infection. He also said that he knew about Stevan on Wednesday last week and had set up all the tests to prepare him for surgery and was disappointed that Dr. White didn't see him. He had also thought that Stevan was about to be discharged and he started making phone calls to make sure that didn't happen. Apparently he got pissed off and called Dr White's Intern and pissed him off, who in turn called Dr White and pissed him off. Dr White then called Dr Lam and chewed him out. During that time some communication finially started happening and Dr Lam found out that Stevan was on the schedule for surgery Tuesday afternoon, something Dr White's Intern failed to tell Dr Lam.

Dr Lam is a very committed doctor, he continued to come in and informing us of things that we needed to know. He asked us who had prescribed Stevan the hydrocortizone. I told him Dr Holter. He wanted to know if we had followed up with an Endocrinologist. "NO." Did anyone tell you that you should increase his dose when he feels sick? No. Well when he's feeling sick he should double the dose. When he's really sick like he was, throwing up, he should have tripled his dose. That was part of why Stevan was feeling good.

Finally, Dr Lam told us that Stevan's kidney's had taken a hit and were not working right. WHAT? What do you mean? Stevan's kidney's are not "hot", but tests show that his kidney's were not working correctly but it was not permanent damage and with time it was reversible. So what was the cause of this... too high of a dose of Vancomycin. This morning when Dr Lam and Dr Selby came in to visit, Dr Lam told us that Stevan's Vancomycin level last night (almost 24 hours after his last dose) was at 60. WHAT?! Last Monday it was at 25.7 which is high, considering its supposed to stay around 20. No wonder Stevan was throwing up and sick. He was being overdosed.

This morning Dr White also came in and checked on Stevan. He ordered another bone scan to see what was going on with his arm. There was one done before Stevan was released after the transplant. White is having a hard time believing that the bone is infected, considering there is no symptoms in the arm, which is unusual. He said that when the bone is infected, it tells you by having other symptoms. He thinks that Stevan was having a medicine fever, caused by the overdose of the Vancomycin.

We are now waiting on the results of the bone scan to see if Dr White will actually be pulling the rod out after all. If there is no hot spot in the bone, then Dr White is going to suggests that Stevan goes off the Vancomycin and see what happens.

I will post more when we get more information as the day goes by. Stevan is feeling better, he's not nauseous, hasn't ran a fever since last night, 99.3. He's been sleeping this afternoon like he usually does.

Hello Hospital Room Day + 68

I'm going to make this short. It's been a L O N G   D A Y..... I will go into detail tomorrow what today has dished out to us. In short, this morning we left the house to go to Dr Whites office for his appointment at 11am to discuss the possibility of pulling out the rod in his left humorous that was put in last year but has caused him to develop the bone infection after his transplant. We got a mile from the house and he had me stop so he could throw up. I gave him some Immotrole but a few miles down the road he had to purge again. We were able to keep going with out any further problems. We had to stop at the lab to drop off his 24 hour urine sample, which also meant that they had to draw a blood sample to go along with it... That's when all of Stevan's problems began to get worse. I will leave these next details til tomorrow.

We are now in a room at OU Medical, settling in for the night. Tomorrow will bring more information for you and surgery for Stevan.

Please be patient with me as I try to keep you up to date. It does take time to type everything up in an orderly and understandable fashion and sometimes.... I'm on overload and I can't seem to get the words out because I don't understand what we are being told until I sit and absorb it for a bit. Thank you for your thoughts and prayers. Reading your words here and on Facebook lift me up, while God gives me strength to carry on.

"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.

Fever!!! Really??? Day +61

I got about three hours sleep this morning after spending two hours in the Paris ER last night. Stevan wasn’t feeling good yesterday afternoon. He began to complain about an upset stomach after eating lunch and having his afternoon medicine. He layed down from 5pm til 7:30pm. He finally got up to hang out with me and the kids, but after 10pm he asked me to get the thermometer. He thought he might have a temperature... sure enough, 101.1. We called the BMT unit in OKC and got ahold of his favorite nurse, Jenny. We told her what was going on.

Let me back up a bit and tell you the back story here. Friday Stevan and a friend of his began working on a chicken pen that we desperately needed to house our growing population of chickens, baby guineas and baby turkeys. Stevan doesn’t seem to know when to stop... so he got too hot.

Jenny told us that she would call the doctor on call and let us know what we should do. A few minutes later she called and told us to go to the emergency room closest to us. I took his temp again and it was going up.. 101.3 By the time we got him to Paris ER it was midnight and his fever was up to 103. They ran a CBC, UA and urine culture, chest x-ray, and blood cultures. Everything came back clean. They gave him two Tylenol and checked his vitals after an hour. His fever dropped to 99.2 so they released him around 2:15am.

We called the Cancer clinic this morning and told Sheri, the Medical Assistant, what had happened. We discussed what he had been doing. She agreed that he more than likely just got too hot, but she would discuss it with the doctor and would call back. She did say that he didn’t need to be outside at all today.

Stevan slept most of the morning but got up to go eat lunch at the "red B", where I was working today. He then visited his mom and came home for his health care nurse to do her weekly blood draw and hook him up to his medicine. He was asleep when I got home at 3:30pm. I layed down and we both slept till 7pm. I finally got up and did some chores around the house, cracked open a watermelon for dinner and he got up to eat some. Around 10pm he checked his temp again and it had come up again... 101. I checked it a few minutes later and it was at 100.

We discussed what to do and he decided to take two Tylenol and go to bed. We will call the clinic again in the morning and let them know what happened. I dont think either one of us can handle another night like last night.

Hopefully we won’t have to go to OKC, but I have my doubts that they will have us stay to stay home and do nothing.

Many Disappointments Day 57

I want to begin by finishing the story on Doris from yesterday. She was a sweet lady getting a allogeneic transplant while Stevan was finishing up his at the first of June. As I said yesterday when we got to Dr Holters office I saw her and began catching up with her and her husband. She wasn't feeling good and her husband was very concerned since she was sicker now than she was in the hospital. Before we went in for Stevan's appointment, Doris came out from seeing the doctor. I wished her luck and I hoped she got to feeling better. She simply said "We are going back to the hospital now." I can't tell you how much my heart hurt at that moment for her and her family. This was the beginning of our disappointments for the day.

We had been visiting with another couple, where the husband had been released from the BMT unit the Monday before Stevan. His wife, I discovered had been a nurse. She would get so frustrated with him because he wouldn't do what the doctor had told him to do. Her and I had a lot in common! LOL. He had been doing well, but he also was on an antibiotic for some kind of infection. He only had to take it twice a day. And like me, she has had to revolve everything around his medicine schedule. She said she felt like a jailer trying to make her husband do all the things he's supposed to do or keep him from doing. LOL. We shared stories and it made us feel so much better knowing we were not alone!

I can't remember exactly what was said after we got into the exam room, but this is close to how it went. Dr Holter was the only doctor in the office and the Physicians Assistants were taking the patients with general visits... yes that was us. The PA was nice and asked all of the general questions... how was he feeling, any coughing up blood, fainting, swelling, fevers... She listened to his heart and lungs. The only other thing I really remember her saying was... "It looks like we need to do a tandem. But we are ordering another round of labs to make sure." My question, "Does that mean there was an M-spike in the last set done at the last visit?" PA, "Yes, it appears there was still evidence of an M-spike. But sometimes that is the case so quickly after a transplant, that is why we want to go ahead and run labs again to make sure." The PA never said how much of an M-spike there was on the labs. I will be putting together some questions to either call and ask one of the nurses next week.

A nurse came in and we asked more questions, "How quickly are they wanting to do the tandem?" Nurse, "As quickly as possible. We will have to wait until he is done with his antibiotics for his bone infection, but as soon as that's done then yes he will be ready to do the transplant." Us,"Will he have to take more oral chemo before he goes back in for the transplant?" Nurse, "No, unless he waits several months to do the transplant, then yes." Us, "Will he need to have more tests done before the transplant, like before, on the heart and lungs? And if so, will it take as long to get his insurance to approve of the transplant?" Nurse, "Yes. Matter of fact we can go ahead and get those test done while we are waiting for approval and while he is finishing up his IV antibiotics."

Stevan will finish up his IV antibiotics, Vancomycin, on Aug 8th. Pattie, the BMT nurse coordinator called this morning to tell us that his Heart and Lung test will be July 27 in the afternoon. We will then have to go back over to the infusion room for more labs to be done for pre-transplant. His next appointment with Dr Holter is on Aug 15, which will will be able to ask more questions and get a date for admitting him for the tandem transplant. The nurse yesterday said it could be the following Monday, Aug 20, (the day I am supposed to go back to work).

Stevan is upset and of course disappointed. He said originally he didn't want to do the transplant, but God moved him to do it. Yesterday in the doctors office, the first thing he said was, he wasn't doing another one. He missed out on deer season last year, he wasn't missing it again this year. Then he said he'd wait till Christmas to do it. Last night we got alone, we talked and he's feeling hurt and disappointed. I pointed out the fact that his first transplant, went so well and fairly easy, compared to others we have read about. And if he considers the fact that now almost two months out he can do just about anything he wants (within reason). I told him that he really should just get it done as quickly as possible, so that he can get it over with and be ready to hunt at the end of October, when muzzleloading begins. I think it is beginning to sink in now.

There are still a lot of questions to be answered. I'm not sure how much I will be able to stay with him this time around. We know what to expect this time around. I will have to talk to my principal and see what I can do. I hate missing out on the first of school. It sets the tone for the rest of the year. But as it should be, Stevan is my main concern.

Thank you for the continued prayers.

Waiting For The News Day +56

Wanted to give everyone a quick update, as things have been busy with new baby chicks, church camp and a new baby calf. We are sitting at Dr Holters office right now, waiting to hear if Stevan's stem cell transplant was a success. When we came into the office, I got to speak with Doris and her husband. She was another stem cell patient I met the last week that Stevan was in the hospital. Her numbers are up but she is feeling worse... Not sure why. She is a leukemia patient and was given her sister's stem cells, which make it a longer recovery. Her husband said the cells was 95% grafted into her body. Her story reminds us that God has taken very good care of us and we are blessed. There has been so many prayers going around for us that I want to say thank you, and no matter what, we are in God's hands. It's been over a year since he's been diagnosed, we are past the tears of sorrow, and we know that things could be a lot worse. I will post tomorrow the results of our visit.

And All Is Well Day +44

We are tired from yesterdays events. We were up at OU Medical Center to get Stevan's Picc Line inserted at 10am. The nurse we had has was a specially trained nurse who does picc lines all day. He was her first appointment. When we told her all of Stevan's symptoms and they were planning a sonogram of his neck to rule out a blood clot from the other line at 1pm, she decided to get things rearranged and do the sonogram first. The good news, everything looked great! No clot.

Stevan must have been nervous. His blood pressure was a lot higher than it had been in the weeks before. It took the nurse about 10 minutes to put the picc line in. I was able to stay in the room, but I decided I was not going to watch. A few days ago, Stevan and I had looked online and found a video of a picc line being put in. I was getting sick just watching it, so I decided not to watch Stevan's being placed. Stevan said the numbing shots hurt worse than the actual placing the line.

Stevan looking at his picc line
for the first time.

After lunch we headed to the Physicians Building to get Dr. Bender to remove his double lumen Quinton. Stevan was his last appointment of the day and he was running late to boot, but once we got in there it took less than five minutes for him to get prepped and pull out the line.  Again, Stevan said the needles numbing him hurt worse. Dr Bender stuck him about 3 or 4 times and I guess I blinked because I never saw him put the line out. Stevan said he got instant relief in his neck when Dr Bender pulled it out (he never saw him yank it out either).

The hole left in his chest from the Quinton line.

This is the Quinton line that was in his chest.
This is a big line compaired to the picc line.

They were concerned that the line was infected on the tip, but the nurse who assisted Dr Bender said that it did not look infected and it must have been aggravating the muscles in his shoulder into his neck causing him the swelling above the line placement, muscle spasms and pain in his neck.

Stevan says his neck feels much better now. No pain. His throat is still a bit sore but it should go away soon. The picc line will now be used over the next month to administer his antibiotics for his bone infection in his arm.

It was good to come home last night to this wonderful surprise. Its a reminder to enjoy the life going on around you as you deal with your health issues.

This mama has seven babies.

This is a goot mama. Her six babies are her second set this year.

Getting Answers Day +43

We got a phone call at 8am this morning telling us Stevan had an appt at 1pm for a sonogram. We told them that we lived about four hours away so that wasnt going to happen. She is going to get it reschedualled. Tomorrow morning they will put in his picc line and in the afternoon will be taking out his central line. It was good to know they are concerned and getting things taken care if so quickly. Please pray that this takes care of the problems Stevan is having with is neck. I will post more information tomorrow.

Could There Be More Problems? Day +40



A pot of greenbeans I tipped and
canned this past week.

It has been a busy couple of weeks since my last post. I have been trying to get the house back in order, the garden under control and the animals sorted out. My garden had three foot high grass that I have had to mow and weed eat it to get to my tomatoes, peppers, squash, cucumbers, and okra. It has taken some long hours harvesting, cleaning and canning pickles, stewed tomatoes, salsa, green beans, and purple hull peas (the two latter ones given to me by my grandfather and mother-in-law). 


My 2nd picking of tomatoes and the
first picking canned.

It’s been so hot during the daytime, that we haven’t been doing much until after 8pm. We then have broken out the watermelon and enjoyed sitting out on the porch. This is about the only time Stevan can get outside without sweating and getting his port infected, which leads me into what happened yesterday at Stevan’s appointment.

We went to see Dr Jeremy White, Stevan's Orthopedic Oncologist. He is in charge of Stevans' left humerus bone that broke last summer and the infection in the upper part of the same bone, due to him not having an immune system after the SCT.

We discussed some of the changes in Stevan’s behaviors. He’s been sleeping a lot more than he was after he got out of the hospital. He's basically sick of being sick. Stevan has been getting an upset stomach after eating. He gets out of breath when he exerts himself, not that he can do much. Dr White said that is common in a lot of patients who have been sick for as long as he has and can't really do anything either.

We have questioned whether Stevan’s double lumen Quinton was causing the left side of his neck to hurt and have muscle cramps ever since his high fever in the hospital. At his last appt on June 20 with Dr Holter, in charge of his SCT, we we mentioned that the home health care nurse had not been able to draw blood from it and it seems to be collapsing when they tried. She ordered stronger Heparin to be used to pack it after his antibiotic is run and then his line flushed. She thought that this would keep it from clotting up. We mentioned all of this to Dr White today. He decided to let his nurse, Sarah, come in and "play" with his port and see if she could get some cultures drawn from it. It was a no go. After a closer look she said that is appeared to be slightly swollen above where the line was inserted into his chest.

Even though the hospital did an ultrasound on his chest and collarbone area before he left the hospital, thinking there was a problem with the line, Dr White wants another one done on specifically his neck to check for a blood clot that could be causing the trouble. He also wants to pull the line and put in a picc line to be use to finish his antibiotics. They would then test the tip of his Quinton line to see if there is bacteria on it.

Dr White needed  to talk to Dr Holter and discuss what they should do, before anything is done. Today a nurse from the BMT unit called to talk to Stevan to see what was going on. She told him they were scheduling him an appointment to get the line pulled and to put in a picc line. With the Fourth being tomorrow, she would get back with us and let us know. We figure it will be either Friday or the first of next week.

We did get to see the bone scan that was done. It show a dark spot at the top of his left humerus where everywhere else was gray in color. It was a pretty poor visual but you could tell something was different there. We also saw a few x-rays that was taken during the bone biopsy. They really didn't show anything other than where they took the biopsy at from the bone.

We will be hanging out here at the house tomorrow, trying to stay cool. Happy Fourth of July!

One of the watermelons we did damage to.
Yes it was good and sweet!

One Year Ago Today Day +29

It was one year ago today that we met Dr Khalil and did Stevan's bone biopsy and aspiration, leading us to Stevan's diagnosis. We at least had a name, some answers, and somewhere to start. Its been a hard emotional road. Sometimes we don't know where we are going or what is around the next corner but we keep traveling down the path letting God lead us.

Yesterday was a long day for us. We were up and out of the house by 6am in order to go up to OKC to go in for Stevan's first follow up in the clinic at the Stephenson Cancer clinic.

We arrived at the lab at 10:30 for them to draw blood from his line, however they couldn't get it to draw. The nurse had to put Activace in his line and let him sit for 20 minutes. She tried to draw it again, but she was still having trouble.  She decided that Stevan needed to go to lunch and let the Activace do its job. After an hour we went back up stairs and she was finally able to get it to draw.

Stevan was then ready for his dose of antibiotic, Vancomycin. The infusion room let us use their machine, so I set up his line and let him run for his hour dose before we went on up to his appointment with Dr Holter.

The lab gave us his numbers... All is very good!
white cells     5.1
red cells         3.56  just a little low
hemoglobin   10.7  a little low still
platelets         405  Great number!
There were two numbers that showed how his kidneys are functioning. They were about double their high normal number. The nurse said that was normal after him receiving chemo, but they would be worried if those numbers were triple the high normal number.

When we saw Dr Holter, I had to snitch on Stevan. After being couped up in the BMT for almost four weeks, it was difficult for Stevan not to go outside and try to do things, especially when the kids and I were working outside in the garden trying to get it back under control. On Tuesday he got on the mower to try and cut some parts of the garden down. When I kicked him off of it, he then went and started the tiller and began to till. Her reaction, "REALLY! What part of don't play in the dirt and don't mow do you not understand?" There was several times I have had to chase after him with a mask for him to put on when he has gone outside. His line dressing is having some problems staying dry and clean when he is outside in the heat.

After Dr Holter examined him, she said that his numbers looked good so he doesn't need to wear his mask outside, but he still can't play in the dirt or mow and since she is worried about his line getting infected with sweat, she told him that he couldn't do anything that will cause him to sweat. With temperatures soaring in the 90s and close to 100, he can't do anything outside. He can eat fresh fruit and vegetables now (he has been already, since I have been carefully washing and cleaning it at home for him). She cautioned him to stay away from salad bars though.

Finally, Dr Holter said she had to order one more blood test and a 24 hour urine test to finally look at his protein count to see if the Myeloma  is still there. This will determine whether or not he will need to do a tandem transplant. If there is no detection of protein, there will be no additional transplant and he will be considered in "remission". She does want him to do a few months of  maintenance medicine. She says that some of the research has shown that it helps with keeping the Myeloma at bay. We hope she will discuss this in more detail on our next visit in four weeks.

Happy Father's Day +25

It has been quite busy around here the last couple of days. When we got home on Thursday, we were met by Sheila, the nurse from Health Back, to administer Stevan's antibiotic and train me on how to give it. We had another nurse come in at 2am and yet another one at 10:30am on Friday to watch me and make sure I would be able to handle the process.

The kids and I got up Friday morning and went to fill six prescriptions for Stevan and pick up his Father's day gift. We then had to beat it back home to meet up with the nurse. It was then back to Broken Bow to pay some bills, run some errands, grab lunch, go to the bank and finally to the grocery store to get food. Stevan ventured out with us, but wore a face mask to protect him from germs.

We had a couple of different people come to visit on Saturday. It was nice to catch up with friends and family, but Stevan was worn out and had to take a nap. It was pretty much a lazy day the rest of the afternoon for us.

Today we were able to attend church this morning. Stevan wore a mask, a bandanna around his head and hand sanitizer in his pocket. It was nice to be back and have everyone welcome us back home.

We came home and celebrated Father's Day by eating goulash, giving Stevan a big candy card that the kids made for him. It was too cute not to share, so I've posted some pictures of it.

I have been administering Stevan's medicine to him since Friday afternoon. It is quite an ordeal. I have to first clean the ends of each line then flush both with saline. I then hook up the IV to the pump and to Stevan's central line. It runs for 1 1/2 hours, which I then disconnect him and flush both lines with saline again. I finish by placing heparin in both lines to keep them from clotting up. I do this every 8 hours.

We have been adjusting the times slowly to keep from having to dose him in the middle of the night. We have finally gotten it to 5am, 1pm, and 9pm. We can deviate about 30 minutes so we can move the times a bit if we need to from day to day if we need to adjust when we give him his medicine. Tonight as I was trying to get him set up, the pump kept giving me an error. After restringing the tubing a couple dozen times and still getting an error, I finally called Walgreen's after hours number. Guess what, our pump has gone out! WHAT? Are you kidding me?

Temporary solution: figure out how to adjust the clamp to get 15 drips a minute. After several tries, I think I finally got it. Final solution: they are to have another pump here for us by noon. I sure hope so! I don't like having to do this part. I'm afraid I'm going to screw it up.

I'm going to close this out for now. I have a lot still to get done around the house: get the weed-eater out around the house, weed my poor garden so that I can walk through it with out being afraid of snakes, till the garden, and begin picking squash, tomatoes, peppers, okra, corn, and beans. I will continue to keep you updated, but it might now be every day.

Going Home Day +22

We got the news early this morning... WE ARE GOING HOME!

Stevan's case worker, Deb, is putting everything in place for Health Back of Idabel to come take care of his line and assist me in giving his antibiotics. He will not have to be hooked up to a saline drip 24/7. I will have to administer his antibiotic 3 times a day over the next 8 weeks, which will take about an hour to run.

The Dr Kevin, who helped Dr White yesterday during the biopsy came in this morning said that the culture has not grown as of this morning. He did say there was some white blood cells in the sample, which could mean there is bacteria. They will continue to grow the culture to confirm their suspicions and we will treat is as a bone infection.

I'm packing things up and will be loading everything in just a bit. We are still waiting on the paperwork and the pharmacy to bring up his antibiotic for us to take home. We will have to make a quick trip home in order to meet up with the home health care nurse at the house to get us started.

I'm a little sad to leave the wonderful nurses and will miss talking to the other caregivers and patients here in the Bone Marrow Transplant Unit. They will have a special place in our hearts as I continue to pray for several patients that are here and having a hard time.

Thank you for all the prayers. It has gotten us through some rough times over the past weeks. God has us in his hands, its very apparent.

Biopsy Day +21

Today started like most of the others as of lately. Stevan slept in as long as he could considering he couldn't eat anything before his biopsy.

Stevan acting up as he gets dressed up
before going in for his biopsy.

They came to wheel him downstairs about 1:30pm. I walked down with him and scratched his head while we waited in holding, as they got him prepped and ready for the operating room. Dr White came in to see him and let him know all they were going to make an incision in his arm in order to  use a needle about the size of a straw to pull out a piece of bone and then some fluid from the joint. They knocked him out for the proceedure, which is why they took him to the OR.

The biopsy took about 30 minutes. They kept Stevan in recovery for about two hours. Dr White came out and told me everything went well. He said that everything looked ok, but he really expected it to. The fluid he pulled out looked like blood. Dr White said that they would set them up to grow cultures, which takes at least 24 hours and as long as 5 days.  At that time they will be able to determine if Stevan's fever was caused by what kind of infection, if there is an infection there. Dr White said that he was pretty confidant that is what the problem is.

If it is the bone infection, Osteomyelitis, it will require 6 to 8 weeks of IV antibiotics, called Vancomycin. To get a head start on the treatment, they went ahead and started him on it.

Stevan's arm is giving him a lot of pain, since the biopsy. They are giving him morphine and oxycodone to help take the edge off. It will be sore for several days.

Thank you for keeping up with us. Our prayers tonight is that the infection will grow very quickly on the culture so they will know what the problem is with Stevan and they will send us home.

Still Waiting Day +20

Yes, we are still here at OU Medical. Nothing happened yesterday except they have decided to take Stevan off the antibiotics for the next 48 hours in order for them to perform a biopsy of the bone in his arm.

There was talk of the biopsy occurring today, but this morning Dr Jeremy White, Stevan's orthopedic oncologist, came in this morning to get the ok from us on what he was expected to do. He told us that the rod is not loose inside the bone, but he would schedule Stevan for the biopsy tomorrow afternoon. This will consist of him going into the OR and being sedated, in order for Dr White to stick a needle into the bone and into the joint to pull out fluid and bone to grow a culture. He said that if it shows there is infection, the rod could be taken out in order to help resolve the issue as a last resort.

Dr Holter came in and told us after the biopsy, they would put Stevan back on antibiotics for 24 hours and if all was well, she would release him. Stevan asked her who was then in charge of him, with so many Doctors now involved again. She said that Dr White is in charge of the arm and infection. She is in charge of the transplant for the week after he is released and then he will be handed back over to Dr Khalil, Stevan's oncologist. Stevan will continue to see him in the weeks to come so that Dr Khalil can follow his blood counts.  Dr Holter did say that if the biopsy shows that there is an infection in his bone, she will set up home health care so they can come to the house and administer his IV antibiotics over the next 6 to 8 weeks.

So that is the plan as of now. Stevan had some cramping in his neck again this morning. He ate breakfast, a couple of bowls of cereal, a first in a few days. He's now taking a nap. I'm about to get out for a few hours and walk the mall and Wal-mart.

Another Day In The BMT Unit Day +18

Another boring day around here at OU Medical in the Bone Marrow Transplant Unit. Stevan had more cramping on the left side of his neck this morning. Dr Mo ordered a stronger kind of muscle relaxer for him to use from now on. It seems to be working a lot better than the Flexeril. He slept til about noon, when I finally went and subway and picked us up a sandwich. His redheaded nurse, Jenni, gave us a map tonight that has a list of local restaurants around close to the hospital. I'm going to have to venture out and try some to the other local places around. We both miss our home cooking.

Stevan took a two hour nap this afternoon before walking the longest he's ever done. A whole 35 minutes back and forth down our small hallway. Then into the shower and resting for the rest of the night. He only ate a small amount of dinner, which has been normal here lately.

A friend of Stevan's cousin, Tabatha, stop by to visit us. Pat Robinson was admitted four days ago to remove a spot of cancer off of her lung. For someone who had part of her lung taken out, she looked amazing. She had talked to Tabatha and learned that we were here at the same hospital. So with a tube still in her chest to drain fluid from her lung she asked her doctor if she could come upstairs to see us. We had a nice visit with her and learned her story and told her ours. It was nice to talk to someone from home. Lucky her, she gets to go home tomorrow.

I'm finishing up laundry tonight. I've been given the code to the room that contains a washer and dryer for me to use. Its a mini one but it beats going somewhere else to do laundry and having to wait for a couple of hours to get it done. The only catch is I have to run a bleach cycle before putting Stevan's clothes in for sanitary purposes. I can handle that!

Hopefully tomorrow we will find out what the doctors have in store for Stevan. I asked the nurses if the antibiotics and anti-fungal was keeping the fever at bay. She said yes. The antibiotic were currently treating the symptoms. If Stevan does have an infection of the bone, it will have to be treated differently than what they are currently doing. So if the doctors take him off of antibiotic, then his fever will return more than likely before they take his bone biopsy. They will then more than likely be forced to put him back on antibiotics to get his fever back down until the results come back with the answers they are looking for to they can treat it specifically.

Tune it tomorrow for what they are planning next. We can't wait either. Thank you for the prayers.

Lazy Day +17

No fever today. Yeah!!! Stevan slept most of the day. He said that he was really tired. The nurses told him laying in bed all day made him sleepy. We have all been trying to get him up out of bed earlier in the day and to walk more through out the day, but since there isn't far to walk and really no where to go and nothing to see, he doesn't see a reason too.

Stevan is still  having some cramping in his neck. Tonight I massaged his neck and back and I noticed he has some inflammation along his shoulder and at the back of his neck. We will be mentioning it to the doctor in the morning. We also have to talk to the doctor about increasing his Flexeril from 5mg to 10mg. The 5mg just isn't cutting it.

Both of us are tired of the food at the hospital. The food is pretty good, but when you have a limited amount of food to choose from and your eating it three times a day for now 20 days, it time to start getting food around town. We had Wendy's today and previously I've brought in Pizza Hut, Church's Chicken, Healthy Hearth, Sonic and Taco Bell. I have to watch out for any fresh fruit and vegetables on Stevan's food because he cant have any due to bacteria can be carried on them. He can't have lettuce, tomatoes or onions on anything. All of his drinks have to come in a bottle form, no fountain drinks except for shakes. Even everything that is ordered up from the cafeteria has to be covered to keep out any kind of bacteria.

I will close for now. I'm sure there will be little report tomorrow. Its the weekend and nothing seems to happen around here during the weekend.

SubNote: I have changed some setting on the blog. I think I have fixed the problem with being able to make comments on the blog. I know that some people are checking the blog on their phones and I'm not sure you will be able to leave comments when using your phone.

And Things Had Been Going So Well Day +16

We have been at the hospital for 19 days now.  On Day 11 post transplant (14 days in hospital) we were in hopes of going home in a couple of days. Yesterday we were told maybe Monday. Today... they wont tell us when Stevan will be released. But they are going to aim for us to be home by next Friday.

This morning I told you that we were waiting for the doctors to come in and tell us the result of the bone scan done yesterday. Dr Holter told us that there was something peculiar on his left humours bone (the bone that was broken last year) where the rod was placed in his arm last year.  She was sending Infectious Diseases and Orthopedics to come in and talk to Stevan.

One of the Infectious Disease doctors came in and after the exam and scan, they believe he has   Osteomyelitis, an infection of the bone. This can occur when there is bacteria somewhere in the body. Since Stevan's immune system had be compromised by the chemotherapy and stem cell transplant, it is possible for this bacteria to go to the area of the titanium rod and grow there.

They are not sure what kind of bacteria it is, so they are wanting to get a bone biopsy of the area infected. In order to do this they want Dr Holter to stop the antibiotics she is giving Stevan so that they can get a biopsy that is not effected by antibiotics. They want him off of antibiotics for at least 48 hours.

First they want to get a MRI of the shoulder and arm. This will give them a better look at what is going on with the bone. That probably wont happen til Monday.

Last night Stevan had some problem with his central line. It was giving the nurse problems when she went to draw his labs. She could flush it, but it wouldn't draw blood. They decided to put a blood thinner in the line to sit and dissolve what ever was blocking the flow. It worked but this morning, blood was leaking around the line site, so they cleaned it and redressed the port area. For some reason it began to leak again and by this afternoon it looked bad. They tried to apply light pressure on the area hoping it would help stop it from seeping. It didn't work.

The unit supervisor, Debbie ordered platelet for Stevan, even though his platelet count is the highest its been. She is in hopes that it would help stop the bleeding by boosting it again. It helped, but its still leaking a bit.

On to the counts for the last few days.
                       6/6     6/7      6/8
White cells     3.2      2.5     1.8
Red cells       3.01    2.78    2.70
Platelets         22        55       70

His potassium has continued to be around 3.3 which has continued to get him IV potassium each morning. As you can see his white count has continued to drop so he was given a nuepogen shot this afternoon. This lead me to ask the nurse the question "If Stevan's got an infection, why is his white count dropping? It should be going up? Right?" Her answer, "Yes, you would think so." Guess I will have to ask the doctor this in the morning.

I have to end this post by switching topics a bit. We of course have been here a few days longer than expected and obviously more to come. We have met some pretty amazing people in the BMT unit who are going through transplants as well. Most are having Allogeneic (donor cells) transplant. It has given me the opportunity to talk to other caregivers.

I met one gentleman whose wife had an allo transplant using her sisters cells. He was a truck driver and she had been so sick that he took several days off to stay with her. He was so worried about her lack of progress after the transplant. She has had a lot of visitor up here, many her siblings, considering she is one of 12 children in her family. She took a turn for the worse Wednesday night and Thursday morning she was taken to ICU. I don't know her name but please remember her in your prayers. I could see the pain and frustration on her families faces.

Another caregiver that I instantly connected with is also a teacher, Jackie Strack. Her husband's first transplant had been an auto, but was here this time having his second transplant (Allo). The Strack's were right across the hall from us, as well as another couple (I never got their name) who's husband had a transplant a month ago. The good new for them, they both got to go home today. There is now only three patients in the unit. It's kinda of lonely.

I mention these people because as caregivers, I learned that we click very quickly. Its difficult to explain except that only we understand what we are going through caring for our spouses, as they go through their cancer treatment and transplant.  We look out for each other, making sure each of us are ok and have someone to talk to as we "have to step out and take a break."  I may not have my friends and family here with me, but here in the unit... the nurses, that I talk about have become my friends, and the other caregivers have become like a family to me.

I want to close on something upbeat tonight. Yesterday as Stevan was getting ready to head out for one of his test, our nurses Debbie and Morgan, came in to help him get "suited up" to leave the unit. Stevan was sitting on the bed as we were helping him into his yellow "gown", gloves, shoe covers, head covering, and mask. He goes to stand up.... and his PJ bottoms fall down....
Needless to say, he gasps and bends down to pull them up, as the rest of us bust out laughing. After we all had a good laugh, Debbie admits she shouldn't laugh at him, but then says "it was funny." I must admit though, it felt good to laugh... and Stevan was laughing and smiling too.

We must all count our blessings and laugh even when things are not going as planned. Things will work out for us and even though we have now hit a bump in the road, God is on our side and with his help all will go well.

More Tests Day 15

Yesterday was almost a fever free day. Stevan was on two antibiotic IV meds and now an anti-fungal med as well. Dr Holter was still trying to figure out where the fever was coming from so in order to try and rule things out she ordered a bone scan of his shoulder and full body, as well as a cardiogram to check out his heart. She said that if they all come back clear, they were going to assume there is something wrong with his central line and pull it. They would then replace it with a pick line in his arm.


Stevan waiting for one of his tests.

The highlight of all the tests, he got to get out of the BMT unit for about three hours yesterday. He was a bit excited, since he's been threatening to go past the double doors for about a week now.

One of the interns came by last night and told us that the cardiogram looked good, no concerns. They had yet to get the results of the bone scan back. He wanted to wait to pull the line until he had the results back.

At midnight he ran another fever 100.7 F. Not high enough for them to be alarmed but enough to take note of and watch. By 4:30 am it was back down to 97.3 F.

Stevan has actually been sleeping at night for the last several nights now. Part of that is from the fevers he's been running, and from the medicines they are giving him. I know that God is giving him sleep to keep him strong.

We are waiting this morning for the doctors to show up and tell us any news. As of yesterday morning, we are here til Monday.

Fever and Ice Day +14

Last night I left off with Stevan's fever had dropped to 100.7 F. Around midnight it was back to normal but then back up to 99.5 F around 5am this morning. They began giving him two kinds of antibiotics through his IV as a precaution in case he had an infection somewhere.

Dr. Holter came to visit and she explained that with the high fever he had last night, she could not justify sending him home today or tomorrow. She ordered blood work, urine sample, fecal sample, nasal swab, a chest x-ray, sonogram of his arteries in his neck and arm. She was concerned that the pain from his neck could be caused from his central line. She wanted to make sure there wasn't something messed up or infection in the line. Between all of the tests Stevan tried to sleep. He continued to run a fever around 100 F all morning until about 3pm.

Around 4:30 PM Stevan asked if I would turn the air up (warmer). He was covered up in two blankets and still shivering, so I checked his temp, 101.8 F.  I stepped out and told the nurse that his temp had come back up. In about 15 minutes she came in to find him with his head under the covers. His temp, 103.2 F. After she called the doctor she gave him some more Tylenol and then ice packs to put under his arm-pits and groin to try and get his temp down. It has been slowly dropping ever since. As of right now its down to 101 F. He's already been given more antibiotics like last night. His nurse, Diane, will continue to monitor him tonight.

I must admit, today has been the most worried I have been since being up here. I hated to see Stevan so sick and miserable. I really hope the worst is over. I know that God is in control, but to see a loved one in pain, its never easy.

Not Yet Day +13

This post should say Going Home... but not yet. Stevan ran a small temperature last night of 100.2 at 7:30pm, they decided not to let him go home today. Dr. Holter told him as long as he didn't run a temperature he would be able to go home tomorrow. He was obviously upset that he wasn't going to be able to go home, but she explained that they sent someone else in the unit home yesterday and within 4 hours had called, because they were running a fever and were headed back to OKC to admit them again.

Dr. Holter ordered chest x-ray, blood cultures and urine sample to rule out an infection. Stevan slept til about noon and finally got around 1pm to eat some cereal for lunch.  Then back to bed around 2pm and slept til 5pm. They gave him a shot of Nuelasta again, to try and boost his white cells. This will help him fight any infections or colds he runs into. He got up and did his walk of 20 minutes and showered for the night. I scratched and rubbed his head, which is still releasing his stubby hairs. I noticed then that his head was a bit warm.

So going home tomorrow? Well, that's not going to happen either. He is currently running 102.2 temp. They just gave him some Tylenol, Ativan and Flexeril (for his muscle cramps in the back of his neck that started last night. He still didn't sleep well last night. Partially from the pain in his neck.) Tonight they are going to start him on IV antibiotics as a precaution. As a result they will keep him for at least another two days. I would rather him be here as long as something could be wrong. I don't want to have to drive home, just to turn around and bring him back.

It will all work out. We got a text last night from Lena, Stevan's ex, letting us know that she and Dustin both have a sinus infection and he has just developed a sore throat. I mentioned this to the doctor this morning and she was very clear that Dustin had to be on antibiotics for at least 48 hours before Stevan can have contact with him. I called Lena to let her know this. She wanted to tell me that they were taking NyQuil and it was helping. I told her that would not do it, Dustin had to be on antibiotics in order for Stevan to be around him. She tried to argue with me, but I continued to tell her this is what the doctor said and she apparently didn't understand the severity of Stevan's condition. She continued to try and argue with me.  I guess I finally got through to her since she texted Stevan this afternoon to let us know that Dustin had an appointment tomorrow. The plans are to pick up the kids on Friday afternoon. Hopefully we will be out of here by then. We can only pray!

As I finish this up, his fever has dropped to 100.7 Praise God! Now if it will stay down.

Good News Day +11 and 12

Yesterday went fairly smoothly. Stevan did have a bit of nausea in the evening and couldn't eat his steak burritos he had requested from Taco Bell. He did enjoy his chocolate shake from Sonic though. Considering he hadn't taken any thing for nausea in the last couple of days, I'd say that's not bad.

All suited up to walk the hall, his daily exercise.

He still didn't sleep Saturday night, so last night they gave him Vistaril around 9pm then a shot of Adivan in his IV line, along with all of the prayers I know that was sent up for him yesterday that has finally done the trick. He slept. Dr. Holter put in an order for the nurses to watch his oxygen level over night as he was sleeping. He's had some problems with his oxygen level over the last two weeks and last night they saw them dipping to 88% at times and then back up to 95%. They believe he has sleep apnea.

Three years ago when he had his appendix taken out, the recover nurse told me that he would stop breathing at times. She told me then that she suspected that he had sleep apnea and it should get checked out. Well he doesn't admit it and would never go, but now Dr. Holter has ordered a sleep study to be done. She says that this will make him feel better once they get him diagnosed and treated for it.

Finally on to the great news. He is getting released to go home tomorrow. His body is making white cells and platelets. Since his platelets are below 50 he will probably get a bag of platelets again tomorrow before he leaves. His potassium continues to be low too, so he got another bag of it along with 4 big potassium pills...he calls horse pills, this morning.

Counts for        6/3        6/4
White Cells      .6          .9
Red Cells        2.86     2.77
Hemoglobin    8.8       8.4
Platelets           23        24

Light At The End Of The Tunnel Day +10

I won't say Stevan has had an easy go at his stem cell transplant but considering all that could have happened, he's done pretty well. He's had some nausea, which we got under control pretty quick. His sense of smell and taste has been distorted to the point nothing smells or taste good, but he has managed to eat something each day.

This is before the head shaving.

The worse part of this whole experience has probably been the pain in his ribs on the right side due to the Nuelasta shot, which helped boost his white counts. His constant diarrhea has been another pain in the butt, pun totally intended. He's had it since day 6, which has inflamed his hemorrhoids. For the last three nights, he has struggled to sleep well, which has got him almost delirious to the point he's dozing off and on, talking in his sleep, dreaming crazy dreams and then waking up. It is not a restful sleep. Last night they gave him Vistaril, but it did nothing.

Halfway through the shaving. 

Yesterday he discovered some of his hairs were falling out. Before he took a shower last night he decided to go ahead and shave his head and face, so that it wouldn't be falling out into his food and in the bed. He gave me the privilege of shaving his head. We tried to have a little fun with it, as you can tell with the pictures I took.

We have had high hopes that we would be home by June 8, next Friday. This morning, Dr. Holter told us that his counts were coming up on their own fairly fast and she was looking at sending him home by Tuesday!

And its all gone.

For those of you following his counts here they are from this morning:

White Cells    0.8
Red Cells       2.85
Hemoglobin   8.7
Platelets         36

His potassium has been so low, probably due to his diarrhea, that they gave him 80 mEq last night and then again today.

Stevan ask for continued prayers for him, primarily for his sleep. He's exhausted from lack of sleep.