Day 66 at St Jude

I woke up at 2am, hooked up Jesse’s meropenem. Then I went back to sleep until my alarm sounded at 2:30am to take the eclipse ball off. I also gave her zofran at that time to keep her on schedule with that.

At 8:30 our phone rang to let us know we didn’t have to come over for labs at 9am. But to come over for school at 10. Jesse couldn’t be with the other kids for school, but the teacher was supposedly coming to see her.

I decided to walk Jesse over to St Jude. I’ve noticed the isolation parking spots are often full. And I suspect that when people can’t find spots in the normal parking area, they automatically park there. Plus when Jesse and I stepped outside, this car had parked so close to mine that opening the driver door wouldn’t be wise. I did take a picture of their car in case they ding mine.

I was correct, all the spots were full. St Jude says they will pay for a cab to carry you from isolation to the isolation door. It’s nice of them, but I can ruck her over 🙂

When we went through the double doors, a nurse met us. She checked Jesse in, then placed a yellow gown and gloves on her. We were taken to D Clinic to wait for the teacher. Turns out, they didn’t plan this out really well. At 10am, the teacher is teaching a class. She asked if I would come down and get Jesse’s school work.

Jesse was beyond upset. She enjoys going to school. The teacher did say she’d work out a schedule where she could come see Jesse over the next two weeks. She also gave me Jesse’s work for today.

I returned to D Clinic where they had Jesse in isolation. She was talking with our child life specialist. She told me she’d asked Jesse why she was in isolation, and Jesse could tell her plus understood this is to protect other children here with no immune systems. I commented that I kind of felt like Jesse was the old man in Monty Python. “But I’m not dead yet. I feel fine. I could dance a jig.” The child life specialist told us that St Jude is extending isolation times because they are having lower infection rates. I get that too. I also feel that if they’d kept her on prophylaxis bactrium we wouldn’t be playing these games. Then on the other hand, that might explain now why she has these normally good bacteria who are resistant to lower class antibiotics appearing in places they shouldn’t be. We spoke for a few minutes about the isolation policy, and then put on gowns and headed for the isolation door.

Back over at the Grizzlies House, Jesse talked about how much she hates cancer and why does she have to deal with this. I told her that on the bright side, we aren’t going to have to deal with the crowds of people. And I was honest with her too. I hate it as well. And I don’t know why she has to deal with this.

Jesse was hungry so I ordered some lunch. She actually ate their grilled chicken. The lady who brought us the food is interesting. Not sure if having a bad day, over the job, or views all of us as lazy and needy. She asked me in a thick accent if I needed the room serviced. I misunderstood her and had to have her repeat what she said. With an exasperated look she asked if I needed the room cleaned. I asked her yes please. I don’t like having other people clean the room, but it needs to happen, and they haven’t given me the cleaning supplies.

I actually wouldn’t mind staying in isolation for the duration of our stay because the internet over here works great, and we are a 3 minute walk from the main patient building. Just give me the cleaning supplies I need, and you won’t know I am here. Jesse is over the being kicked out of places. The nurse came today to say we could leave. She put it as our visit for that day was being terminated. Jesse asked, “We’re being exterminated?”

I think that is the part of the isolation bit that ticks me off. Yes I understand RMH has no isolation room, and they want to clean the room. But in two weeks I can almost guarantee they are going to send us back there… and they are going to want us to go through orientation again. All of this will take place while Jesse is starting to feel like crap from the chemo.

St Jude gives their patients a lot, and I am grateful for that. But they need to work out the housing a little more. It would be awesome if they had more housing on the campus. The convenience of being on the campus is huge. RMH is a mile away, which isn’t bad. But you can’t walk it due to the crime in this area. Target House is 5 miles away, and from the privacy offered there… that is where many people want to be. RMH is quiet and nice, but you run the risk of sharing space with people like the greedy bingo adult ladies.

Today being Wednesday is Jesse’s Ethel study day. Since she is still on fluids, this takes 4 hours to complete. While waiting on the ethanol or placebo to do it’s thing, I went upstairs to do laundry. Jesse began to stress over her shot until I reminder her she only has 1 more shot. The last shot for round 3 will occur tomorrow.

I went to get the pizza coupon from the front desk because Jesse wants pizza again. As I was returning to our room, I ran into a family that arrived about 2 weeks ago. They asked how we were doing, and I gave them advice not to get too comfortable anywhere because you can be moved. They told me they have been trying for a week and an half to get out of the Grizzlies House (They have been at Grizzlies for 2.5 weeks). There is a waiting list for the Target House. And RMH is saying they have no available rooms. She told me other families they have met are having to stay at the Crowne Plaza.

All this makes me wonder where Jesse and I will go once she comes out of isolation. We should have a week to 2 weeks of recovery after the chemo before they make her inpatient for Round 5. I am not sure how scans will be fit in this time since her counts won’t really drop. When we called home tonight, we joked about bringing the camper and setting it up in the parking lot at St Jude. All we need is a sewer, water, and electric hookup. Also please put us in a spot with great internet reception. I can see us now with our lights on the awning set to purple at night… cooking on our grill… our portable fake campfire set out to roast marshmallows. And with the warm weather, our windows open to enjoy the great spring warmth. We could even bring Maggie to be our greeting dog (cause that is really what she does at a campground… everyone is her friend). 🙂