"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!