Day 26 thru 28 at St Jude

The internet at the RMH bites and the one here is acting up with my computer :(. For some reason it blocks my access to Jesse’s site. I do have a hot spot, but Friday it decided not to work. I miss my iphone horribly. And Saturday, we were running around so I didn’t even turn on my computer.

Friday morning, Jesse got to sleep in. I was up to giver her a dose of merapenum through her CVL. I really like those eclipse balls for infusions. They are really cool.

At 11, we went out to try the car with fingers crossed. Thanks to the Alaskan redneck the car started. (and I mean that with no disrespect at all. Renecks are very innovative people who work with what they have… and I think if he wasn’t in a company truck, he’d have had a beer can 🙂 )

Jesse and I first met with her nurse practitioner to get her medicines set for going inpatient. then I called the Ethel study research nurse to get the Ethel medicine. I had to leave a message.

Since we were an hour early for our appointment with the line nurse, we went to C Clinic to wait. Lukily she took us early. Super nice line nurse.

In order to get the sterile supplies for Jesse’s line and clave changes, I had to clear with the line nurse. And to clear, I had to basically do the changes with her supervising. The newest part for me was the betadine because of Jesse’s allergy to cloroprep. Thankfully the line nurse was very impressed with how I did and what I remembered. And sadly doing the dressing and cap change was like falling off a horse. It is a horse I wish I never had to get on again, but I will do what needs to be done to keep Jesse alive and well.

After seeing the line nurse, we had a wait to see the optometrist. He gave Jesse a prescription for +3.5 glasses. I don’t fully understand what this means vision wise, but I do know that her eyes have stayed dilated from the antibody.

St Jude doesn’t make glasses on site (bummer), and the last appointment the place that does had was 5 minutes from when he handed the prescription to us. The optometrist releazed this and suggested getting reading glasses to cover until we could get to the place.

I still had not heard from the Ethel Study research nurse. So I called the research doctor. Turns out the medicine was ready Thursday, but not ready when we picked up Jesse’s other prescription. Yeah. So we went to pharmacy and got the prescription.

At this time Jesse was bawling because I wouldn’t take her to McDonald’s. She had been rude to the optometrist and attempting to channel a diva. I am not interested in that behavior.

We then went to patient services to get the mail and supplies we needed for home.

We arrived back in time to give Jesse her next dose of merapenum. When that was completed, I put the ethanol/placebo in her lines to sit for 2 hours. Then we ran out to Kroger.

The Kroger closest to us was more crowded than our Walmart at home has ever been. I think we are going to try to find a different one in the future because it was filthy in there too. It took us an hour and 15 minutes to get the few things we needed.

We got back to RMH just in time to take the ethanol/placebo out. Afterwords I cooked dinner for us. It felt so good to cook. Jesse ate really well and wanted to keep grazing. Around midnight she was finally full.

On Saturday morning, I started cleaning the room and packing while Jesse slept. She awoke around 10am wanting bacon. After eating, Jesse and I finished cleaning the room and headed off to find Target and a place to cut my hair.

Across from the Target, we found the Plaza Beauty School. I remember years ago my aunt had a beauty school nearby that she always went to have her hair cut. The people inside were more than happy to shave my hair off, and even let Jesse help. She got the biggest kick out of this. When the hair cut was done, the lady who did it wouldn’t take a tip and the instructor wouldn’t let me pay for it.

The instructor fell in love with Jesse and made her feel really good about her how she looks right now. Which I think Jesse looks too cute with no hair and now glasses.

We returned to RMH in time for dinner. Laurie King Ministries made dinner. It was fantastic. After that it was time to go watch the Harlem Globetrotters. RMH provided the tickets and had 5 limos for us to ride in. Two families with kids fighting leukima were super nice to take Jesse and I under their wings to make sure we got back to RMH.

I am not sure what Jesse thought about the game. She talked to me last night about the fact the team in black played the right way and the Globetrotters played funny.

Once we got back to RMH, Jesse and I grabbed our stuff and headed over to St Jude. At 10:30pm, we were situated in our room. I think Jesse caught a second wind because it was 2am before she went to sleep.

Today at 9am they started the chemo. By 10am, she was done with chemo for the day. Right now we are hanging out waiting to see if Jesse needs blood. She has been eating fiercely today. Mike is now here to get ready for Friday when he will donate the natural killer cells to Jesse. Chris is at home.

I am really sorry that Chris couldn’t come this time. Mike told me when he told her that she became very upset, even threw things in the house. She told him that she just wanted her family back together. I have worried about her as much as I have worried about Jesse. I worry about the long term fall out for her. Hopefully we have taken the right steps to help her work through the frustration of it all.

Thank you Abby for your package and card. Jesse was so excited with your card that she had me pack it to bring to the hospital. She also talked about seeing you on the playground.

Thank you Jon and Courtney for the coloring books and Itunes card. Thank you Sandy for the books. I remember reading about Mike Mulligan and his steam shovel. Jesse has enjoyed the book and was so upset at how mean they were to Mary Ann.

Thank you Daphne, NC family, and Meme and Papa for your cards.

Jesse is already planning her trip to the mail room. And the room we are in this time is closer to the elevators. 🙂