Day 92 at St Jude

Today Jesse was schedule for a CAT scan. The doctor had moved this up to take her scans before the surgery conference tomorrow. I am really tempted to borrow a lab coat and a wig to be at the conference. I don’t want to hear any of the other kids. I just want to hear Jesse’s and hear it straight.

I laugh because the 3rd street entrance has a sign that says “Community and Communicate: Notice the Similarity.” Stop directing the signs at your visitors please. Direct them at your employees. I am really concerned that they will see me on Thursday for her clinic appointment, and I won’t get the straight scoop. Surgery is a big deal for anyone. I need to know the correct information to make an inform decision concerning Jesse’s welfare. If they try to remove any tumor, her intestines will have to be moved. This will put them to sleep. I’ll just have to bring my saddle to clinic on Thursday and start riding people to tell me the whole story.

I want to know what good putting her through surgery will do. They are going to have to cut scarred tissue. How much can they actually remove? Also if they open her, move the intestines, and decide they can’t, why should I torture her with that? And how long will she take to heal? She has seen the medicine tubes down other kids’ noses. This is a huge concern to her. If we move the intestines, then she will have to have an NG tube to remove stomach bile. How will this effect starting chemo? How much bleeding will occur? Her chance of survival having surgery: better or the same as not having surgery or you can’t tell me because everyone is different? And if she has surgery, you aren’t removing everything anyway because you can’t see microscopically. Plus it’s attached to major blood vessels. How are you going to get the tumor out without cutting her causing a bleed out?

I am trying to think of all the questions I need to ask. I guess I should ask too: “Why can’t you people communicate with me and stop talking around me, just because I don’t have a doctorate or a nursing degree?” At this point I even wonder if I am going to be allowed to have a say or even talk to Mike about his opinion on it all. And I am really scared that this is not the right decision for her. Yes she might die from the cancer, but if she dies on the table… well that is time we lost. Then there is the other side: if we take out some maybe we are getting the part that wants to keep growing and trying to steal her life.

Jesse saw the word “CAT” on her schedule last night. She has been concerned since last night she was going to be turned into a cat. I pointed out several times that she has not ever become a cat from the scan. Then I decided since she was interested in believing me, she could find out for herself.

She was really chomping at the bit to go get the CT Scan over with. But I told her we had contrast to drink first. This also gave me time to do laundry and rearrange everything in the room to minimize what we absolutely had to have in this room. My thinking is that I don’t know when they will kick us out, so I have to be ready.

Jesse could not eat after 7:15am. She did have to drink contrast with 6oz of liquid at 8:15am, 9:15am, and 10:45am. I am not sure what was in the contrast, but she was dancing around the room and laughing at everything. Kid even did 20 squats.

At 10:50, we went over to St Jude. The isolation nurse had no record of Jesse coming. After a few moments and phone calls, they figured out Jesse was going to D clinic to wait for the call from Imaging. The nurse shook her head when she got off the phone. She had a hard time getting them to understand her. I told her I felt her pain. Jesse was busy cutting up and not paying attention to anything we were doing. Glad she is feeling froggy.

She put us in a room to wait. After 10 minutes it sounded like Imaging was ready. I could hear the nurses talking about how we should have just gone straight over there. Once at Imaging, we had to wait behind a curtain till they were ready.

In the room with the CT machine, they hooked Jesse to a machine that would give her the final dose of contrast. The bed slid in the donut 2 times, then slid in while the CT Scanner began spinning. In 5 minutes, it was done. Jesse remained really calm throughout all of it. Then we were out the door and back to Grizzlies. As we were walking back, Jesse suddenly said, “Yeah I’m not a cat! I’m still a human.”

I fixed Jesse some lunch, ordered lunch for me, watched her eat 2 more things of GoGurt, and found out we are supposed to be leaving the Grizzlies House. About 1pm, a lady knocked on the door. “You leaving today?” I looked at her confused. “Not that I know of.” “You’re on the list to be gone. You better call patient services.” All of this in the tone of “You best be getting off my property before I find my dog or gun.”

I called patient services. They did have us on the list to be discharged, but from that list they had no mention of where to. I told them as far as I knew Jesse is still in isolation. The lady said she extend Jesse’s stay at Grizzlies through Friday morning breakfast. And to call back when we knew what was going on. Then she asked if we wanted to come get mail. I told her that we couldn’t because Jesse is in isolation and I am the only one here with her right now.

Around 4pm for some reason, her stomach got the better of her. Shortly after there was a banging at the door. I figured it was the people coming back to tell us we had to vacate. Luckily it was a very confused lady.

Tomorrow Jesse has school at 8am (for those of you who have witnessed the “what do you mean I have to wake up,” this should be fun.) Then at 1:30pm, they will inject the MIBG isotope. This afternoon Jesse told me I was insane. I told her that it is because I live with this animal that is 104cm, 15.5kg, and thinks I’m the maid/butler/tech support/chauffeur available at her whim.

Thank you Wilma Cropper Circle of the Kings Daughters and Nancy Hula for your support.