Day 109
Last night there was a very impressive storm here. I heard it over the fan that constantly runs in the room. The fan constantly runs to drown out the sound of I-40.
I finally zonked around 3am.
The only thing that Jesse had to do at St Jude was school. We did that and headed back to our room. There I changed Jesse’s tape and claves, then we waited for time to get Mike and Chris.
Thank you Pat and Dallas for the rabbit, candy, and other goodies. Thank you Mom for the coloring book.
Day 110
Saturday, we ran to Target and Kroger. Jesse enjoyed playing with her sister. I got in a run around here. I am getting out of running practice 🙁
Day 111
This morning, Jesse looked pale to me. She also complained of being tired. Against her wishes, I called the medicine room to see if they would do a blood count for her.
We arrived at the Medicine Room at 9am. Jesse’s temperature was 98.8. The nurse took her labs, then witnessed me giving Jesse her huge potassium pill. Turns out there is a better way to give pills. You can get capsules from the pharmacy, cut the tablets, and jam the pill in the capsule for swallowing. Why do I get to find these things out late in the game?
Mike ran back to the room to grab his phone. As Mike was returning the nurse came to take Jesse’s temperature for blood… 100.5. She opted to wait for awhile and try again. Chris and I ran back to the room to grab some snacks Jesse might eat. While we were gone, the nurse took Jesse’s temperature again: 100.9.
As we were returning, the doctor was coming to examine Jesse. She will get meropenem again. I don’t know how long. And that was basically all he said. He did tell us her platelets were 28, ANC was 0, and red blood was 7.2.
The blood transfusion took 2 hours to complete, and by 3pm we were headed upstairs to a room. And actually a room right now with good internet connection and one wall made of windows. Why can’t all the rooms have these windows? Light, wonderful natural light.
The nurse came in evaluate Jesse. Turns out they are stopping the potassium and nitrofurnation. The potassium can be given through the IV pump. Since we are doing meropenem, there is no reason to continue with nitrofurnation.
Right now we do not know if this fever was the cause of a UTI or something else. It will take 48 hours to know that. All we know is that because her ANC is 0 we are trapped back in prison. Yes this place is the equivalent to me. Jesse’s medical record number is the equivalent of a prison record number. There has to be a better way to treat cancer that would allow a child to stay home more often.
The nurse in the Medicine Room telling me about the capsules apologized for adding the capsules to our plate of things to have to do. Mike and I both said at the same time, “All of this is a pain in the butt.” It’s hard to be happy or feel like yourself (even your old self) when you constantly have to worry about the next step and feel like the treatment is not working. Plus we aren’t home. Jesse is a homebody. Heck I would rather be at home too. At home she has her friends, her sister, her life. Here its constant strangers in and out that you have to be nice to when you really would rather be left alone.
Chris and I ran back over to the room to grab some clothes, toothbrushes, and snacks (plus showers) for the night. When we returned the security guard made us sign in. More like feeling you are visiting prisoners. I am surprised she didn’t search my bag for contraband…
I asked when this procedures started (because between the three of us, we’d been in and out of this building 4 times today without being questioned.). Turns out some guy got in the building last week, onto the second floor of the hospital, and started a ruckus of he wasn’t leaving. The police had to remove him in handcuffs and leg chains.
The security team rolled the video back. The guy who was on the desk when the trouble maker got in no longer has a job. And parents have been telling the security team homeless people are jumping the fence somewhere on the property asking for smokes. I noticed on my run yesterday that a construction gate was wide open with no security person at that gate. Some concern…
I gave Jesse her shot when we returned. Then the doctor came in to see Jesse. Nice guy. While he didn’t touch Jesse, he didn’t gown up. Not his fault entirely because there is no sign on the door that Jesse is in isolation. We talked about her ultrasound I was told would take place tomorrow. He left to see if that was still on the books. I also talked with about if this is a UTI, I feel like we aren’t fixing the trouble. I am tired of the band-aid approach. I hope I am wrong. I hope this fever is because of the il-2, which we might never have caught had Jesse not needed blood.
Since getting the blood, Jesse had not run a fever. She has has complained about her stomach hurting.
I am concerned how this is going to affect our meeting with her main oncologist. Will he make the effort to come upstairs tomorrow? Or are we going to have to chase him down? We need to figure out what is really going on in her right labia and groin. This swelling is a concern, and just blaming blood flow isn’t going to cut it. We need to figure out something to stop the swelling. And if there is an infection pocket there, we need to do something.