Topic: Update on Charlie
I haven't had a lot of extra time to write or check the board lately, but ALWAYS KNOW you are all in my prayers and thoughts. The wonderful people here have helped me hang onto a little of my sanity throughout Charlie's illness. Here is where we are now: I think I updated a few weeks ago that there are no other medical interventions to try and that Charlie has a wonderful Hospice nurse, Karen visiting every Monday. Charlie is down about 20 pounds in 3 weeks. He is pretty bright orangish-yellow. He always has a sense of humor though, talking about how white his teeth look now against the new skin color. The itching from the bile ducts being blocked by tumor has been the worst part for him. We've tried a multitude of creams and medicines. He's on Remeron now, which is a psychiatric medication (antidepressant I think), but used off label for itching. If that doesn't help in a day or two, I want to see if he can try Ramficin (read about it from Pauline on the site I believe). Hospice doesn't have it, but don't see why we couldn't get it through Walgreen's. Someone emailed me to try tea tree oil. If all fails, I want to look into the possibility of an outside drainage catheter...anything to relieve the miserable itching. Charlie had a high energy day on Sunday, going all day, church, visiting, etc. Since then, he's been completely wiped out. Charlie feels like he may have a few weeks left, but of course we don't know. It's very hard on Sarah and Ben seeing their funny, energetic, strong Dad deteriorate so. Ben (17) is seeing a Hospice counselor. I can relate to some of what Ben is dealing with as I lost my Mom to cancer at age 17...very hard age. Boys in general don't open up as much as girls and talk to their friends so I know it's tougher on him. I'm sure Ben is thinking about his Dad not being here in June when he graduates from high school and seeing him off to college. Our daughter Sarah (20) has a sweet boyfriend and lots of girlfriends for support. They both still live at home with us. All you caregivers out there, please take time for yourself. That is something I really haven't done and need to. I do ask for prayers for "a good death" for Charlie - no pain and surrounded by his loving family. He is not afraid of continuing on his journey to heaven. He knows we will miss him more than he does us and that we'll be there with him in the blink of an eye. I pray for strength and comfort for all of us and for God's will to be done. It is hard to accept as we are already in mourning for so many things that Charlie can't do anymore, but eternally grateful to have this precious time together. Thank you for always being here for us!