05/23/11

Sometimes I sit and think about what I should post on our blog. Should I share every single experience and happening in our family? Do I share each precious moment or miracle? Should I just get down to business and do bare-bones updates? I don't know...so I guess it sort of depends on my mood. Which is definitely connected to how Jeremie is doing.

Maybe today I will share a little bit more...It is difficult for me to be less private than I am. Sometimes I wish we hadn't told anyone and we could just pretend nothing was different and we could just go about our lives. But then I regret that thought, because I think it is through others love, prayers and hope that I'm currently living on. Aaah pretending can be so fun.

Jeremie started Dacogen (the chemo therapy that is more of a containment type, than eradication type) last week. He had 5 days of treatments. They went pretty well. It was hard on him though. He had to travel everyday to the infusion clinic. Had to have 2 units of blood last week and have labs done. So every single day Jeremie was out and about. This is quite a bit of work for him. The good news is that it seems that the Dacogen doesn't have a major nausea/vomiting side-effect. He now has 3 weeks off until the next treatment round. He was also started back on the Cyclosporin for his immuno-suppresant. He started having severe joint pain. Which they think was a result of graft vs host disease. So he went back on a small amount. It will take several days of taking the medication to get a good blood level. We will wait and see if that helps.

Usually the weekends are when Jeremie does the best. We try a little something new each weekend. The prior two weekends involved the Harley Davidson store :-) Ha Ha Ha. Man I'm a sucker for him. Or we try a different thing for him to eat. Right now he likes the Mocha Frappachino's from Starbucks. They have serious calories! I usually indulge myself in some yummy Chai. Trying to get food down him is harder than any two year old I've encountered. It is even more difficult to keep it down. He was quite disappointed that he wasn't feeling good enough to go out this weekend. He is exhausted and has been quite nauseated over the last few days. Last night was the hardest night I have had with him since he was first diagnosed in the hospital. He decided every single thing that he has ingested over the last several months should be evacuated from his body. It is wrong to see a human being so miserable. I felt so bad for him. All I can do is stand there, and clean everything up as fast as I can. I'm hoping this is a latent side-effect to the Dacogen. It also can be a result of graft vs host disease...UGH. My brain never stops thinking!

My kids are out of school on Wednesday. I'm so stinking excited I can't see straight. The stress that is relieved at them not being in school is enormous. Plus, I like someone home during the day with Jeremie. I think they are pretty excited too. It will be our first memorial day weekend in 4 years that we haven't moved. That alone is pretty cool. Not sure if we will do anything. It is hit and miss with what Jeremie feels up to. Some days I think he can run a marathon, and others I'm not sure if he can get up to eat. We are still trying to figure this all out. It is so hard not knowing what to expect. 

He tells me that some days he feels like he is going to live forever. And yesterday he said he wasn't sure he was going to make it through the night. I guess that is normal. Having these up and down moments. You never know if he is just trying to recover from the transplant, having a side-effect from medication, or is just severely anemic. The balance of everything astounds me. Our bodies are perfect, sticking things or medications in there disrupts the perfect balance, not crazy to feel yucky from them. But don't like what happens without them either. Sort of just stuck.

Well I think I'm done rambling...

Love,

Cori