03-12-2011

Yay...arrived in Salt Lake. So happy to be near my sweet Jeremie. My bed was already made up too :-)
Luckily I didn't wake him when I arrived at 11:00 p.m., he was getting some blood work done, some more antibiotics hung and was wide awake. I got to enjoy laying by him and holding him. It felt so good, I can't believe it was real.

Slept pretty good too. They are definitely in his room more during the night. But I think I have learned to tune them out (finally!), or I'm happy they are here and checking on him. Could be both!

I spoke with one of the oncologists yesterday. She wanted to give me an update. She said Jeremie is stable. Jeremie looks miserable and is miserable. She explained that he has a staph infection (on his skin). His poor skin is in terrible shape. He has rashes, swelling, dry skin and flaking. All normal for this stage of the game. She said it wasn't uncommon for him to have a staph infection given the state of his skin. So they added another antibiotic. Poor guy was started on Vancomycin. Yuck! You can give Jeremie chemo and radiation and he does pretty good. Give him an antibiotic and the man just feels terrible. Vancomycin has to be ran very slow with Jeremie, otherwise he turns into a big rash and pink all over.

So his poor right eye is swollen shut, due to the violent nature in which he expels the contents of his stomach (i.e he throws up). And his left eye is also blood shot and swollen. He is very puffy and is retaining some fluid. Again was told to expect this, and this isn't outside their range of normal for transplant patients. His mouth/throat still hurts him quite a bit. As does his legs. I'm thinking he possibly has some gout action going on again. I asked if they could run a uric acid level, just to be sure. 

He told everyone yesterday that I was coming and that I would kick his bum into gear! I laughed! So I get to be the mean wife and make him walk, stretch, shower and do lots of mouth care today. I look forward to the challenge! Ha Ha Ha. I already gave him a time limit for him to rest. I'm hoping we can get into a routine of self care before I leave. He needs to be stretching his poor legs, walking and maintaining strength. I'm afraid that the last several weeks he hasn't been walking and exercising as much as he should, and he is quite weak from being in bed. Probably another reason his legs hurt so bad.

He is so sweet and patient. He is miserable yet he looks to see what he can do to make me comfortable! He is a darling to his medical helpers. Although I'm afraid I would be very cranky! I can't believe how much patience one person can have. This is a terrible ordeal to go through. And it amazes me that many people survive and find cure with this regimen. I can also see why many choose not to do it or don't survive. I'm amazed at Jeremie's strength. I stand in awe.

This is definitely the low period for him...and expected. I gotta keep reminding myself of that! This is expected, this is what we were warned of, this is what we feared and this is what is being worked through. Doesn't make it easier, but it does help me breathe.

When we were signing our lives away (felt like it anyway) to begin this process of transplant. We talked about all the possibilities with our oncologists. How to proceed if the leukemia comes back during this process. How to proceed if Jeremie needed ICU support. How to proceed if Jeremie "needed" ICU support, but transplant wasn't working like hoped. Basically we talked about all possibilities and how we wanted to go through this process. It was a wonderful conversation. We came away feeling understood and supported, no matter the outcome.

When the oncologist called me yesterday she brought up the possibility of Jeremie being admitted to ICU. She said he is stable now, but that can change in a heart beat. She said she would recommend ICU treatment if he needed it. Meaning that he is doing well with the transplant, looks to be disease free and ICU treatment would help in his healing during this process. It made me feel more relaxed to be honest. I don't want him to end up in ICU, but it is nice to know if he was sent there it would be for giving this transplant the best chance in working.

So many different levels of stress. Needing him to be in remission, and give the transplanted cells time to grow and work. Needing him to be infection free so he can stay strong. Needing him to stay physically strong so he can get through this. Whew...just a couple more weeks of waiting. Jeremie is at day 16. Approximately 6-26 days until we should see signs of engraftment. They will be looking for an increase in white blood cells, specifically neutrophils. And he will not be needing platelets and red-blood cells like he does now. He will start producing his own. He will then be able to start the healing process on his body. Things will change rapidly from that point on.

Well that is all for now...

Love,

Cori