Day 137
About 2:30am Jesse woke up wanting to play. She did play with her ipad for a bit before crawling on the couch with me and zonking.
We slept for two hours spurts. While she is on chemo, Jesse is required to get up every two hours to pee. And the team told me later in the morning, they are happy to see she is going 300 to 400 mls of output every two hours.
When we finally did get with it, the clinician came for Jesse’s weight. She has dropped to 15.3kg from 15.6kg the day before. Her labs came back showing red blood at 10, platelets 78, and ANC 4700. The nurse practitioner claims that we snowed Jesse by scheduling her ativan.
At 9:30, Jesse had her last dose of etopophus. Then at 11:30, her last dose of ifosphomide. The antibody started at 12:30. Jesse did complain of a little bit of pain. She also complained that the fentynol was making her feel loopy.
About 1pm, her main oncologist stopped by. First question he asked in exasperation was “Why is she back in isolation?” I explained it to him. Then I asked him about leaving Tuesday or Wednesday. From the transplant coordinator I have learned Jesse will not have the natural killer cells transfused to her until at the earliest 3:30pm; the latest 6:30pm. We will then have to wait two hours to see if she has a reaction.
He told me that we’d decided that on Monday. My thinking is why can’t we do a blood chemistry on Monday, then check her again Tuesday morning. We are going to be sitting around waiting anyway. If she needs a blood product, let’s get it done on Tuesday. This way I can leave with her on Tuesday and drive through the night. If we need to drive straight to Norfolk, no problem.
The respiratory nurse stopped by at 4pm. I guess this guy gets a lot of flack from patients. He came in the room apologizing about being here to bother Jesse by listening to her and poking and prodding. I told him it could be worse. At least he wasn’t here have to shove a tube down her throat.
He looked her, deemed that she looked good, and told me he would be here, but being Friday after 4 he couldn’t guarantee he’d be sober. I told him I was jealous and to enjoy Cinco de Mayo 🙂
When Jesse’s antibody finished, I changed her tape. Having the nurse helping me allowed me to flip the loop in her line to the opposite side. Hoping this gives her skin a break because it looks like a spot might be rubbing. Unfortunately Jesse spent most of the tape change crying. I think the fentynol and other drugs caught up again, making her extremely tired.
Jesse dozed off. I took the opportunity to run over to Grizzlies for a shower. When I returned, she was still out. As I was walking back to the room, I overheard her main oncologist talking to someone who had just passed me about trying to leave here early on Friday. I am kicking myself for not turning around and saying “I’m trying to do the same thing.”
The attending doctor came in about 6pm. I had actually written off not seeing him at all because of being after 5 on a Friday. I did tell him I was impressed he was still here. He told me that he has not left before midnight every day this week.
We talked about the growth of patients here at St Jude. We also talked about neuroblastoma and what he is seeing the labs currently studying. He told me the same thing my uncle said about neuroblastoma being cells we are all born with. In many people these cells develop into what they are supposed to and reach their terminal end. For people with neuroblastoma, unfortunately something was arrested in this process of cell development. Thus causing the cell to not finish its job as it should have.
The hope of all this medicine is to destroy the cells that are diving quickly. And the case of accutane (and what I understand about DFMO) is to make the neuroblastoma cells reach the terminal end they should have reached before.
But in Jesse’s case because she has had treatment before the molecular structure of her cells have potentially been changed. And really it comes down to we are all individuals. The labs are looking for individual ways to treat each person most effectively. And that can be a hard and expensive thing to accomplish.
We also talked about patients falling through the cracks because of the increase in patients. He did tell me that a study has been done showing patients on a protocol have a better chance of not being overlooked. And this makes complete sense. These kids are basically being followed through the hospital on a checklist. And that checklist helps everyone.
About 8pm, Jesse woke up. She was exhausted, but determined to not fall asleep in the bed. She had it in her head she wanted to sleep with me. About 11pm, I finally got her back in her bed. While Jesse was laying in my lap, I asked the nurse what bacteria came back or if it has come back yet.
She was awesome in finding out for me. Stinking E. coli again. The good news is the nitrofurnation has been shown in the lab to be effective in treating it. And I am guessing that since Jesse has a plan of treatment, we won’t lay eyes on the infectious disease doctors.
Thank you Mom, Aunt Carolyn, and Uncle Jerry for the cards and support. Thank you Biscuit for the Dolphin postcard 🙂
Day 138
The night nurse and clinician were very good to me last night. They got Jesse up to use the bathroom every two hours.
At 7:30, Jesse woke me needing to go to the bathroom. I am honestly surprised at how good she feels today. She isn’t interested in eating, but so far Jesse has not thrown up. Her weight has dropped to 14.6kg.
Today we have no chemo, just antibody. At 10:30am, the nurse turned Jesse’s basal rate back on. Around 11, Jesse asked for a banana. She ate half before deciding she was full. The hospitalist (guessing that is a doctor? not really sure, but that is how she introduced herself) stopped in. She was pleased to see Jesse was up and talkative.
She did tell me that the attending would be around to see us. I figure it will be much later because Jesse is finishing up treatment and not a complicated case(she’s complicated, but not he worst one here). She also said she was excited to just have 12 patients to visit today. And from the looks of things, several that are still here are in isolation. The attending made it should like last night Jesse is the only isolation kid up here just on contact precautions. Many of the others are contact and droplet. Craziness.
A respiratory therapist stopped by to check on Jesse. She was pleased that Jesse is not using oxygen.
At 12:30pm, the nurse started the antibody. Jesse complained of pain behind her right knee, rating it at a 3 on the scale.
After the antibody started, I went down to grab myself and Jesse a drink. I ran into a family we went to the Globetrotters game with. They talked about how tired of doctors their daughter is. I talked with them about Jesse, even telling them what our main oncologist said about I should take Jesse home because she might not have much time. She is a relapse case, and unfortunately the outcome is not always good. His comments don’t mean that I have given up on her in anyway shape or form. I just need to get her out of here and back with our home oncologist and CHKD where she isn’t just a number through the system.
The doctor stopped by at almost 3pm today. He was pleased to see Jesse sitting up, playing Temple Run. She showed him the bunny ears she won for the character today. After looking her over, he told her about a new game called Subway Surfers. Jesse is happily playing that now. She enjoys making the poor character whack into the screen.