Prayers For a Friend

Pattie and Pat Killingsworth

http://multiplemyelomablog.com/2015/07/did-all-of-this-really-happen-in-one-day.html

This is a link to a friend, Pat, who is also battling Multiple Myeloma. Stevan and I discovered his blog when Stevan was in the hospital being diagnosed. Pat was going through his first stem cell transplant. That was four years ago.

Over the years, I have been able to talk to pat via phone and email, to get suggestions on what to ask Stevan's doctors on how to proceed with his care. Pat has written four books on Myeloma, which I had purchased and loaned out to another friend, Barbara C., who we became acquainted with who lives in our home town who was diagnosed with Myeloma and was going to Stevan's doctor and underwent a stem cell transplant also. She ended up opting for a tandem transplant (a second one soon after the first) and developed an infection in her blood which ended her life.

When Stevan had his transplant, he had a pretty easy go of it. But he was young, relative healthy and other than developing an infection from his metal in his arm and having to take Vancomycin for several weeks. So these transplants are dangerous and can come with a cost.

I got to meet Pat and his wife Pattie, in March, face to face, at their Multiple Myeloma Beach Party. Pat had been a life line for me and Stevan, giving us so much information and blogging about his experiences and what he has learned over the years since he was diagnosed in 2007. I felt like I was long lost friends who finally got to meet them. It was the last night of the Party that Pat gave us the news that his doctors said that there wasn't much else to do for his Myeloma and that there was a chance that he might not be there next year for the third annual Beach Party. I felt like I had been punched....  It was like hearing I was loosing Stevan all over again.

Last week Pat underwent his second transplant and has not only developed one infection, but apparently several. He is a fighter. I ask that my prayer warrior pray for him and his wife as they go through this trial. He has given his life to help other Myeloma patients and caregiver understand this cancer and this community still needs him to continue his work.

Thank you

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.

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.

Expectations

What are we expecting at the Bone Marrow Unit? Many have asked if he can have visitors, the answer is yes. They have a very open visiting hour policy, except for three times during the day, 6:30 to 7:30am, 2:30 to 3:30pm, and 10:30 to 11:30pm. During these times the nurses will be giving shift reports. Children under 14 are allowed to visit (with some restrictions due to the increase incidence of and exposure to contagious conditions.)  Of course if you are sick we ask that you don't visit, but anyone can come visit if you are in the area. If you can't visit, he will have a mailing address while he is there for you to send him well-wishes. We don't have a room number yet, but I will post as soon as I know.

OU MEDICAL CENTER/Presbyterian Tower
C/o The Bone Marrow Transplant Unit/room #______
700 N.E. 13th Street Oklahoma City, OK 73104

The Bone Marrow Unit is an 8-beds intensive care unit. The rooms have a positive-pressure HEPA filtration airflow system. It's designed to help protect patients from infections. Stevan will be able to walk out into the hallway with a mask, but no further than the double doors leading out of the unit.  Stevan will have a daily routine with chores that must be completed each day. These will be divided up between the 3shifts.

Between 7am and 3pm, he will either bathe with anti microbial bath towelettes or soap. If he feels too sick, his nurse or I will assist him. The daily bathing will help control the growth of  bacteria on his skin. His bed linens will be changed daily as well.  He will be weighed between 3 and 9pm. Finally at midnight, the nurse will draw his daily blood labs. He will constantly have his vital signs, his temperature monitored, blood pressure, heart rate, and respiratory rate every 4hours. They will be monitoring all of his fluids he receives and he eliminates. He will have many resources available to him while he's there. A physical therapist is consulted for every bone marrow patient. They will visit him daily. The therapist will help him to exercise and maintain his strength. This is one of the keys to him being able to go home. A dietitian is also consulted with to help him get the foods that he can tolerate or help with special snacks or request. Social services will be consulted to help with financial aid, medications, home health care and a variety of other needs. A chaplain will be available to him during his stay as well.

House cleaning

We are in the final countdown to SCT, stem cell transplant. We have been very busy trying to get things in order. Stevan has been trying to get things done on his honey do list that I wont be able to do once hes out of the hospital. We have both been trying to get things cleaned up around the house. We have to de-dust the house and clean as much as possible before he goes in, since it will need to be clean when he comes home and I'm planning on staying with him the whole time while he's in the hospital. Im going to keep the other one going but this will be more personalized. I want to be able to connect with other caregivers and MM patience and this is a better way to do that. We called Sherri, who cleans a friends house, to see if she could help us. She gave us some great ideas on how to clean the house and make it easier to keep it dust free over the coming months. She has also requested to enlist our friends and family that is available to come help us on Friday as we try to knock it out in one day.  If we were to have about 3 or 4 people to help we might be able to get it all done in one day. So why are we doing this? Stevan's immune system will be at zero after the SCT. Any kind of dust, germs or dirt could cause him to get a cold or get sick. He will not be allowed to clean house, mow the lawn, garden, walk barefooted, play with dirt or be around people who are sick. There will be a while when he wont feel like doing anything but eat a little and sleep. He will be resticted in doing a lot of things in order to allow his body to recover, heal and build up his white, red and plasma cells up so that whe will have a strong immune system. For a while he will have to wear a mask around people to help keep him away from germs. We are getting things together, packing bags, finding clothes for Stevan, house shoes, and things to keep him accupied while he's not sleeping or sick. Tomorrow, I will cover what we are expecting at the Bone Marrow Unit and things you can do while we are there.