Been a long day and lots kept me busy so this will be short. the infusion went well, Kerrie slept thru everything including a special visit from Fr. Bob Humitz. She woke once in a while to nod her head and say she knew he was here, but not much conversation. An exray taken very late showed that the new feeding tube is in the right place and so she got her medications tonite and drank half a milkshake before she called it a day. Anxious to see some of her lab results tomorrow to see if the treatments are starting to have any affect yet. She is already back…

Hi Everyone, Been a long wait all day. Started off with a bang. Went to set KER up for her breakfast and found her feeding tube on her stomach instead of in it. Her nurse, Sandy, put another catheter right in to keep the channel open and then we waited for the doctor to come see her. He just left and said that as soon as they do an xray for placement she’s back in business. I told Sandy she should bill for her procedure.:) If the board of nursing is checking this site, that was a joke. She performed a normal step to maintain the tube opening. It’s just…

( This post was originally put in the gallery.. obviously Mom didn’t pay attention .. or doesn’t remember.. what I showed her about getting on the admin page from the laptop :). Not sure if people always log onto the gallery, or just the front page, so putting Mom’s post here as well.. Love you Mom..Love you Kerrie) Hello Everyone, Quiet day around here today. Had a nice visit with Aunt Jeaninne and then Ron came tonight and we three “did dinner” together. Kerrie was up for awhile earlier today, but tired out pretty quickly. She tried to nap off and on all afternoon, but everytime she dozed off someone…

The medication finished running around 8:30pm and Kerrie did very well. Her blood pressure went up and down a little, but nothing in the dangerous range and she seemed to tolerate it well. She slept almost the entire time… her pre-meds really knocked her out. We weren’t quite sure what to expect today, but it’s obvious she will be out of it when she’s getting her infusions. She had several visitors today ( our cousins Chris & Jen Whitney, our Grandma Andree, Aunt Mary Jo and cousin Johnathon) and they lucked out.. Kerrie was awake by the time the first visitors showed up. Because of how much this really knocks…

We’ve just started the first dose. She’s been heavily pre-medicated with a ton of benedryl, tyelonol and some other stuff.. and I mean very heavily pre-medicated. In her words.. she’s “Pretty darn stoned”. Yet, she still keeps asking for her dilauded 🙂 Dr. G. and Hortensia have just started the IV drip of this medication and they’ve got her on a blood pressure/heart rate monitor and will check her every 15 minutes. If she starts to feel funny, sweaty, gets a rash, has problems breathing, etc. she needs to let us know right away. Dr. G. is sitting at the desk, oustide Kerrie’s room, and will be there during the…

Kerrie and I had long night of sleep last night. Surprised either one of us could sleep.. but she had her dilauded, and I had my sister sleeping next to me ( Which is just as good as dilauded) so we both got a little sleep. Hopefully, Mom.. Ron.. Dad and Joyce slept well too. Kerrie tried to tell me she was only having chocolate milk for breakfast today.. but I put down the law, “Jenn’s law” and made her eat one piece of bacon, a bite of hash browns and a bite of bagel. At this point, I’ll let her have chocolate cake for breakfast.. if that’s what she…

Sigh… our meeting ended around 4:00pm.. I know people have been checking the site, and waiting, but couldn’t really get on the site before now. Wanted to wait for Kerrie to go to sleep and she’s sleeping, peacefully, next to me now. It’s just not possible for us to call everyone, and none of us are going to want to say this over and over again so please forgive us if we do not give you a personal phone call. This site is going to be the best and easiest means to get this information out. Bottom line.. Kerrie was given three options. None of them pretty, and only one…

Came back to the hospital and Kerrie was sitting on the edge of her bed. Physical Therapy was in here, and they had been working on her walking. Then, she lay back down in bed and waiting for us to help move her to the top of the bed. The PT person told her she needed to do it herself.. so after several attempts of pushing and pulling, with her good arm and leg, she finally got where she wanted to be and had a huge smile on her face! I was pretty darn proud of her. One of the BMT Nurse Practitioners came and and said “I heard you…

Got to Mom’s, getting a shower, and getting ready to go back for this Family Meeting. I’ve had a pretty hard time all week, and reading Mom’s post put me into tears again. Kerrie has seemed to be dealing with this, better than any of us, but Mom’s post just tells me Kerrie’s been hiding it from me. None of us know what we will hear today, though we are pretty confident of the outcome. They don’t call Family Meetings to tell you things are on track or they have something new to try. We won’t be able to call people much today, or maybe even tomorrow, but I want…

Well, tomorrow is the big day…. meeting with Dr. Jana and the team to discuss what the future holds for Kerrie and what options we have to decide upon. I can’t sleep tonight and I know Kerrie can’t (and hasn’t) either. She is very aware of how seriously ill she is. And she is very frustrated at not being able to articulate it. She spends a lot of time “thinking” but is not able to express exactly what she is thinking about. ” Oh, never mind” she’ll say when she can’t find the words. The last few days have been very teary for all of us. A couple of days…