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

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.