For Jesse it has been a long 2 weeks. On September 26, we began the il-2 infusion. I stayed with her until Thursday last week.
The il-2 infusion last 96 hours, and for Jesse was a pretty quiet event. She finished at 5:30 on Friday evening. And since she needed a transfusion, she and Mike didn’t get home until midnight Friday night.
We spent a quiet weekend at home. Mike went to Farm Fresh and was accused of stealing a wallet with the girls present. Funny thing was the girl that accused him fit into another group of stereotypes. Good thing I wasn’t there, I would have told her to watch the store video.
On Monday, Mike brought Jesse to clinic. This is the first admission he has been through. And being that PICU was slammed, it took much longer to get upstairs than before.
They didn’t get into our normal room until 3:45pm. Thank the Lord for our nurse. She had the presence of mind to start the 96 hour il-2 infusion before they left clinic. Even that was delayed because everyone and their uncle’s brother was there to get chemo. The nurse was able to start the infusion by 2pm.
Tuesday morning, I left Chris with Ferfer and headed out to relieve Mike. He had a road trip for a class ahead of him.
Tuesday and Wednesday passed very uneventfully. I am extremely nervous though because Jesse hasn’t run a cap culturing fever this antibody round. We got close, but then she went back down. It makes me wonder if the antibody is working? Or has her body gotten used to this? Plus everyone who has seen her comments that she is not as swollen this time.
I think to that we would have run a cap culturing fever, but each time she reaches 38 C or 100.4 F the night nurse would give her Tylenol. I am very concerned that this has accidentally covered over the fever that might have been there. Last night at 3am, Jesse’s temperature was 38.4 C. The nurse was going to give her Tylenol, but I asked her to hold off to see if the temperature would climb to 38.5C.
I really wanted to make sure that we aren’t missing needing to culture the caps. I would much rather make sure that their are no bacteria growing in her line.
Jesse’s doctor stopped by for a visit. The shirt he had on was getting comments from the nurses. Jesse just stared at him. I asked him if he went to Colonial Williamsburg and borrowed some brown paisley to make a shirt.
Right now Jesse is watching the IPad (thank you Apple and Steve Jobs… you will never understand how much that gadget has saved our sanity and entertained her this last year).
The nutritionist has come by. I am not fond of dealing with her because of the food pushing and making me feel like I don’t try to feed my kid. I don’t know the extent of personal involvement with cancer and the meds, but I sometimes feel like she doesn’t understand. Plus she has to realize the food in the kitchen here isn’t appealing to a kid who’s system is having heavy duty medicines pumped in. When we get home to normal cooking, Jesse will begin eating normally again. Since Jesse hasn’t had a number 2 since Sunday, I have a feeling I am going to have to see her again. We have given Jesse Miralax.
We will finish her infusion at 10:30 tonight. The staff keeps asking when we can go upstairs. The PICU is so busy that they have 7 kids in another area receiving care.
The il-2 will finish tomorrow at 2pm, and then we are out of here.
Jesse has been sleeping at night better this round. I have been leaving the light on during the day so that maybe we can differentiate between day and night since our room lacks a window.
The last two nights in PICU have been nerve racking for me. Mainly because the nurse I can’t stand has been on. It has made me paranoid even though we have had a different nurse. Either way I don’t trust them when she is here because co-workers complain to co-workers. And since they work together, they will stick up for one another.
We have had the same nurse the last three nights. She has been very nice to Jesse and myself. She brought Jesse some chap stick and a Barbie.
And yes maybe I should have said directly to her that night, “You bite and have a know it all attitude. And quit looking down your nose at me.” And of all the nurses, we have met she is the only one I haven’t liked. I guess in this experience to have one nurse, one resident, and one VAT team member that you have to request to be kept away from your kid isn’t too bad because we have met a ton of people.
I will be glad when treatment is complete. I feel horrible saying that I pray we never do this again because there are families that are having to stay in the hospital endlessly for many different health issues.