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.