Day 88 – 91

Day 88

In the morning, Jesse had clinic at CHKD. I only saw her for ten minutes after we went in the clinic. She was busy visiting everyone in the clinic. Her oncologist told us it was E. coli in her urine. That was a big surprise. I was thinking it was the klebsilla again.

We were out of clinic in about 90 minutes and back up the road. Mike invited us to have lunch with him at work. Jesse enjoyed eating with him and his co-workers. Thank you to all of them for the support they have shown us. We really appreciate it 🙂

We had dinner with Melinda, Emileigh, and Landan, then Jesse, Mike, and I returned home.

Day 89

In the morning, the three of us went to breakfast. Then to the store to pick up a few things for the little party we had for Jesse before heading back.

Thank you to those who could come. And hopefully we’ll get a chance to see everyone when we return.

St Jude also sent Jesse’s mail to the house. Thank you Inez for the coloring books and crafts. Thank you for the cards Jill and Mark Dixon, Mt Pleasant Baptist Church Tuesday Morning Bible Study Group, Knob Creek Methodist Church, Louise Marie, Daphene,,Biscuit, Grandma, Aunt Carolyn and Uncle Jerry, Betty, and Nancy and Jim.

Day 90

In the morning, we went to breakfast with Melinda, Emileigh, Landan, and Wendy. Jesse seemed to be handling leaving better than I thought she would. Even at the airport she accepted leaving her dad, sister, and friends better than I thought she would.

In the bathroom, there was a girl bawling. This did set Jesse off a little bit. I overheard the teenager crying about a girl who died running the Shamrock Half Marathon. I felt so bad for her and the girl’s family.

We boarded our plane to Atlanta. Jesse began begging to go to the bathroom. Because we were taxing, I didn’t think she could. Once we were in the air, I was able to get her to the bathroom. And unfortunately she got sick… even after giving her the ativan.

In Atlanta, our flight was delayed 45 minutes. It was here that Jesse really started wailing. Pretty sure that helped some passengers volunteer to wait for tomorrow to fly to Memphis. Her little area was hurting her.

Jesse really enjoyed our row mate. And she was super nice. Even asked us to try to keep up with her. In the Memphis airport, a gentleman had waited around to offer to help with getting our suitcase off the conveyer belt.

We did see the people with wheelchairs for Jesse this time. While it was nice to have that… I would rather just throw her on my shoulders and go. Felt that we stuck out more than I would like to have in both airports.

Once we had our luggage, I went to find us a cab. We had a voucher for the cab from St Jude since Jesse is still isolation. I think that driver would have rather ended up being mugged than carrying us to St Jude.

By 7pm, we were back at the Grizzlies in the same room we left. I went out to start my car since it had been 10 days. Nothing. I decided I would rather deal with it on Monday.

Day 91

This morning Jesse and I were expected at St Jude at 8am. I thought I’d have to wake her up, but she surprised me by waking up on her own. And immediately bursting into tears about not being at home and not wanting to be here anymore.

We have been telling that she does have a choice. However the choice to go home without finishing treatment will have definite consequences: death. Yes even though what we are doing now doesn’t guarantee she will live.

Jesse was so upset by the time we got to clinic, her blood pressure read 128/90. The clinician opted to try her blood pressure again when Jesse had calmed down. By this point, I will be honest… I was over her listening to her cry. I don’t want to be here either. I told her she had a choice. Either we finish out the next 2 rounds positively or she can be negative. I did tell her she would heal faster being positive.

Jesse was still crying with the clinic nurse arrived to draw labs, get sterile urine sample, and fecal swab. They weren’t aware of Jesse’s stay at CHKD or that she was on meropenem for 7 days. As she was finishing the Nuke Med tech arrived. I asked if he was giving her the MIBG radioactive isotope. On Jesse’s schedule, she had 2 Nuclear Medicine injections listed. Since I didn’t have a copy of the schedule for the day, I thought Jesse was still getting the injection.

When we pulled up her schedule, the injection for Monday had been removed. Instead the doctor ordered a test with a radioactive isotope of her kidneys today. They injected the isotope, then drew blood 1 hour, 2 hours, and 4 hours afterwards. This allowed me to get her medicines straight, get supplies, and contact the travel office to return the card they gave us for baggage.

While we waited, the nurse practitioner came in. They are trying to figure out if Jesse will stay in isolation. The oncologist came in after awhile. He feels that Jesse has bacteria that is knocked down by the meropenem, but not eradicated. As he was examing her, he mentioned surgery. I thought he meant surgery to open her if she has an abscess of infection. But talking to the nurse practitioner later, they are going to talk with surgery about removing some of the tumor. I asked her if that was even possible since it was radiated. She said they don’t know, but want to take the scans before the surgery conference on Wednesday at noon to have them decide.

The doctor also said that if nothing grew in the culture they drew, she would be out of isolation. We’ll see if that holds true.

We left at 1pm. I called security about getting a jump for my car so I could take it to Gateway Tire on Popular Street. They had installed a new battery for us in January or February, and Mike was impressed with their service. I am too. They were really nice to put the car right in the shop. The manager told me it was the battery terminal, and they would have it replaced shortly. Within 30 mintues, they were done. When I asked him what I owed, he wouldn’t let me pay because they should have fixed that when they installed the battery.

After we left him, we swung by Kroger to get some snacks. And then back to the Grizzlies. Tomorrow Jesse will have to drink 3 rounds of contrast before her CT scan.