Roller Coaster

Blogging from LDS Hospital - Room 848

OK, so - Tuesday morning: Actually, John had a bad night Monday night and did not sleep much. The bone strengthening injection he had Monday gave him awful bone pain. All night long he was in pain and very nauseas.  Early in the morning he had a fever over 101 so I had to call Dr. Frame. He said to give him tylenol and said he was hoping John would be at the hospital soon. I asked John if he wanted a blessing and he said yes, so I had our new friend Matt Moore (from our new ward) come over. As soon as the blessing was done John felt a lot better, fever was going down and he felt like eating. We were waiting to hear from the hospital though. John wanted to give all the kids a blessing so he did that and I took the kids to school.

As soon I walked in the door from taking the kids to school John said the hospital called. He needed to be there in 1 hour and he should expect to be there for 4 weeks!!!!! OH MY! We packed quickly and headed over to LDS Hospital. What a day we had!!

We got here and it was constant people in and out. Tests and tests and tests. They did an EKG, and took him for a full MRI. There were 2 nurses, a PA, a coordinator, social workers and the Dr. I stayed with John for a ferw hours then went home to shower while they were doing tests. Came back around 2:30 and Dr. Hoda came in. He is great and explained what was going on. Basically John has multiple myeloma that turned into Plasma Cell Leukemia. Only about 2 % of MM patients get this so it is really rare and usually in patients older that 50.

Bascially the plan is to start him on Chemo Monday. It is a 3 drug combo to try and basically get him into a sort of remission. It is a 21 day cycle. Mostly oral pills and he will now come to out patient at the hospital every 4 days for about 1-2 hours of chemo. He should be able to work through most of it as long as his body is responding well and he does not get an infection. Oh and Dr said he would NOT be here 4 weeks, only a few days :)

The long term plan is a stem cell transplant. Long term actually meaning anywhere from 6 months to 2 years. Just depends when his body is ready for it. A stem cell trasnplant can cure him in a way, but has many risks. It is our only hope though and we are positive and know John can beat this. A stem cell transplant is not fun :( and in hospital for 4 weeks then. And it is not always easy to find a match.

We are taking it one day at a time and praying his body is accepting of the chemo treatments. Plasma Cell Leukemia is rare and aggresive and not easy to treat. The Dr's are being aggressive with John and we are hopeful that with him being younger and healthy he will make it through this.

Last night I had a hard night. I got home to get the kids around 5 pm and a friend brought dinner. Kids were pretty hyper. When I get anxious I have a hard time eating. I was eating ok yesterday and even ate dinner. I felt nauseas though and my dinner did not stay down. I was just freaking out about everything and shouldn't let my self do that. I slept from about 10-3 and then could not go back to sleep. Finally got up about 6:30 to get Abby ready for school. I was still feeling nauseas and could not eating this morning (isn't John supposed to be the nauseas one). I had been praying all night for peace. I am just freaking out and cancer has taken so many people from me and I am not ready for it take take my husband. (Just pased to play Phase 10 with John)

I got the kids all to school and came home to shower and cry. I try really hard to not cry in front of the kids. I got ready to come to the hospital and was getting in the car.  All of a sudden I had this instant sense of peace come over me. It was just what I needed and has stayed with me all day. I was able to eat and am feeling fine.

John is doing good. They gave him a sleeping pill last night but then woke him up all night to check vitals and take blood. His bone pain from that injection is gone, he did have a fever at some point last night though. Not sure what is causing that. Dr. Hoda came in again and said he changed his mind after talking to his board. They are starting John on chemo today and doing one 28 day cycle with a different drug. Then will start the 21 day cycle after that. They want to monitor him for the first 4 days of chemo so now he is here through Saturday/Sunday. We all can't wait for him to be home. Dr. says he should be able to work through most of the chemo.

Dr. also said John could go for a walk out side  and we were about to go. But, they just came to get him to take him for a bone survey. It is basically x rays of all his bones. I think it is kind of funny that he needs permission to go out side. He feels totally fine and is not "sick".  When we get him home this weekend he can go out all he wants :)

He hopes to be at work Monday or Tuesday and Dr. said he should be totally fine to baptize Jenna next Saturday. Every thing is one day at a time, but John will be fine.