Day 46 at St Jude

At 5:45 my alarm went off to wake me to do Jesse’s meropenem. The alarm went off again at 6. I got up, cleaned her CVL, attached the elipse, and set my alarm to get another few minutes of sleep.

At 6:30, I disconnected the elipse, and began getting ready to have Jesse drink her two doses of CT contrast. After the second dose at 8, we headed for St Jude and triage. Triage is where they take blood for labs. Jesse has decided that they will always hurt her there and therefore she fusses the entire time. I keep telling her they will not always hurt her because of the CVL, but she has no interest in believing me.

In a way I wish they had one set person so Jesse would learn that they don’t want to hurt her. I think the changing of people messes with her head.

After getting her weight, we headed to wait for her CT Scan time. As we were waiting child life stopped by. The specialist commented that she thought Jesse could do the CT Scan without sedation. I totally agree considering the test for her takes 5 minutes. The specialist said she would email someone to have it noted on Jesse’s chart that she doesn’t need sedation for CT Scans.

Our time for meeting with sedation came and went. Finally about 10, a sedation nurse called Jesse’s name. He apologized that they were running behind. I asked if Jesse could do the CT without sedation. He was happy to agree.

Jesse got on the table and laid her hands about her head. The nurse hooked up the medicine she needed, and the test began. And within 5 minutes, Jesse was done and we were out the door.

Our next appointment was at 11:30 with D clinic and her main oncologist. I was hoping Jesse would want to eat during the time we had. When we went into the cafe, there was no food out save for the pre-packaged stuff Jesse has already shown no interest in. I was a little surprised that the food was cleaned up so quickly.

Jesse decided that she just wanted a drink. We then went to D clinic to wait for her appointment time. While she waited Jesse checked out a volunteer’s collection of wind up toys. This volunteer used to be a pediatrician.

Finally it was Jesse’s turn. Her main oncologist was in a meeting so they asked if Jesse could come back at 2:10 since we had to return for MIBG injection. Jesse was complaining of bone pain so I had no trouble leaving to come back to RMH to get her oxycodone.

The nurse did have some really good news for Jesse: her ANC was 4800! She is done with the GM-CSF shots for this round 🙂

After eating lunch and getting her pain medicine, Jesse and I headed off to Fisher Optical to get her right glasses. The address for Fisher is 920, but you have to enter the building at 930. It was crazy. From what I could gather this is on the University of Tennessee’s campus.

The lady working at Fisher looked like she had taken a very nasty fall. She had several stitches above her left eye. It took a little time to get her to listen to me about Jesse’s current glasses. She carried on about how they didn’t have that style. I finally got her to understand that these were just readers we bought at Target to give her some sight because the antibody has caused her eyes to remain dilated. Plus we started round 2 so fast after round 1, we didn’t have time to get to Fisher for her glasses.

She fell in love with Jesse all because Jesse said please and thank you and was helpful in getting her glasses fitted. Unfortunately while we were there, the screw fell out of Jesse’s readers. The lady was extremely kind in giving Jesse 2 pairs of readers to get her through until her correct glasses arrive. She also gave Jesse a case to keep them in. Jesse was beyond excited.

We finished up around 1:45 and headed back to St Jude. When we arrived it was a little before 2pm. Jesse was due for another dose of meropenem. I hooked this up while we were back in clinic to wait for her meeting with the oncologist.

The guard at the gate keeps giving me a hard time because another security guard who filled out the tag put 2013 instead of 2014. Every time we see him he comments on how the tag is altered. Yesterday I’d had enough. I looked at him and said, “Dude, I really have no desire to break into this place. I would much rather be home in Virginia.” All the other guards look at the tag and wave us through.

He came in about 2:15 and admitted he’d not yet had time to look at her CT Scan, but from the page of information sent to him, he felt pretty positive about it. I think he really wants to wait on his full opinion until her MIBG and bone marrow biopsy have been read. Since those test will occur tomorrow, it’ll probably be Monday.

He asked Jesse is she had any questions for him. She nodded her head. He asked what it was, then had a good laugh when she just said “Hi!” I told him she was feeling froggy. This is a new term for him, but one we use around the house all the time.

We left him, made a stop by pharmacy for a refill of neuronton, then headed to Nuclear Medicine. The technician remembered Jesse. She was really pleased to see how well she looks. I am surprised that she remembers us. Her brother lives in Chesapeake, VA, and we talked about the snow back home.

Before we left St Jude for the day, Jesse and I checked the mail. Thank you Mrs Smith for the tights and socks. Jesse loves them 🙂

Thank you Stephanie for your donation to St Jude. They are doing great things here everyday. Thank you Willie and Renee for the card and well wishes. Thank you Uncle Greg and Aunt Beverly for the stickers and treat money. Jesse hasn’t had time to really go shopping yet for anything between being in the hospital and appointments (and to be honest a few times I feel like I am barely keeping my head above water). This place will keep you running. She wants to go to the zoo since they have Panda Bears here. Thank you also for cutting your hair. Jesse loved the picture on Facebook.

Next we had to run to the grocery store. I need her to gain weight before we begin Round 3. The gentleman at the West Memphis Kroger asked if it was ok to ask what Jesse was fighting. We told him. And he told us that his mom told him that he’d had something removed from his stomach when he was little. He was super nice, and I really pray that his life is full of great things. He patted me on the shoulder when we left and said keep the faith. 🙂

Back at RMH I found a note on the desk saying the staff had conducted room inspections. Since we had no comments, I guess Jesse and I are doing ok at keeping the room clean. I did find a long hair in the bathroom. I know I didn’t leave it because I haven’t had hair that long on over 3 years. And I know Jesse didn’t leave it.

Jesse’s meropenem finished at 10:30pm. Got her to take her zofran for the night, and tried to grab some sleep for the craziness of tomorrow. 7:30 am and 8 am labs, 8:30 D clinic, 9:00 sedation, 9:30 to 11:30 MIBG, but we’ll be done by 1pm CST.

At midnight, I awoke with a start. Jesse threw up what looked to be most everything she ate yesterday. I started washing the sheets, then walked the comforter down to the front office to find the mythical yellow container where comforters are placed to be washed. The guy sitting at the computer told me to stick it in the laundry room and housekeeping will get it around 8am when they arrive. I really hope this is true. I’m going to call to make sure.

Around 2:30am it was finally clean enough to put in the dryer. I fell asleep until it was time to do Jesse’s meropenem at 6am. Afterwards we got ready to come over to St Jude for labs and assessment. Unfortunately this morning Jesse weighs 15.2 kg (33.4 pounds).

Now we are waiting for clinic to open for our next appointment. I heard something pop in my neck when I placed Jesse on my shoulders after leaving triage. Yeah.