Day 95 at St Jude

They have put new furniture in the patient rooms for parents. The old blue chair would recline so that I could sleep next to Jesse holding her hand. But the new chair… it only goes half way. For several hours I tried to sleep, but at 5:45am I woke up with both legs and an arm asleep with my head on her bed. I am sure the nurse probably puzzled for awhile how I got into that position (I was puzzling the same thing when I woke up.)

The nurse had mentioned she needed a urine sample from Jesse between 5:30 and 6. I got Jesse up, she used the bathroom, and then realized I was moving to the couch to sleep. Immediately the water works began. I have been hiding my fears from Jesse, but she is not stupid. When she sleeps she wants to know that someone she loves is nearby in touching range.

I told her that she could sleep with me on the couch. Jesse asked if this was okay because their rules don’t allow parents and kids to sleep together. I told her that since they bought horrid uncomfortable things for parents to sleep on, then they could kiss my grits. The person who purchased this furniture should have slept on it overnight first.

Around 7:30, her day nurse arrived. It’s awesome that they remember Jesse. She premedicated Jesse with zofran and benedryl for the carboplatin. This started at 8:20am. While it was running, a nurse practitioner came in. I asked her about the aprepitant. Of course she had nothing about it on her list to check. I knew that it would go no further than her clinic nurse practitioner. This different nurse practitioner wrote it down to make sure to ask about.

While the carboplatin was running (which can cause long term hearing loss), I ran down to grab breakfast. Jesse only wanted some Powerade. And since we were getting ready to do etoposide, I wasn’t pushing food. As I was downstairs, I ran into her child lfe specialist. She mentioned something about sitting down in a meeting with everyone and airing my concerns. No thanks. Yes I know that is the chicken way, but i don’t have the energy to do that. Plus I can just tell that it won’t be effective. And I’ll be stuck dealing with her in clinic… in the sappy fake sweet voice. I don’t have the energy to deal with it. When I returned the dietician appeared asking what she’d had for breakfast. I told her, “We are starting chemo.” I am not sure if she got it, but luckily she didn’t stay long. And this was a new dietician. I guess the other one was hoping to send her in to have more success? I am not sure on what. Jesse does eat… it just doesn’t stay down.

At 9:30, we started the etoposide. In 2 minutes, Jesse did all the major side effects. First she coughed, then she started turning red and clutching her throat. Her cheeks also looked to be swelling. The nurse immediately stopped the etoposide, grabbed an empty syringe, and started drawing blood and etoposide out of Jesse’s line. As she was doing this, Jesse projectile vomited all over her. This of course really upset Jesse. The nurse never batted an eye.

Fortunately Jesse’s oxygen level never dropped below 96, but she complained about her throat hurting. The nurse called for the doctor. But the nurse practitioner was the first to come. She listened to what happened and decided that Jesse needed the hypoallergenic version called etopophos. I asked, “Why not start with etopophos?” Turns out that it is expensive to make, so they start with etoposide in hopes to save money.

While waiting for the etopophos to be made, Jesse needed to give another urine sample. She actually asked the nurse to help her use the bathroom. I am glad she is comfortable with the nurse. The nurse brought Jesse some paint. She painted while I ran an extra CAD pump and batteries I have been asking where to take to ACU Pharmacy. They actually called me saying they were having a shortage of pumps.

As I walked downstairs to get it out of the car and take it to pharmacy, I noticed several groups here to tour St Jude. I know that helps them with fundraising, but today I wanted to stop and say “Do you really know what this is like? You get to come tour here and feel good about yourself afterwards. They tell you all the stories of the kids they have saved (one of the tour guides is one they saved.) and you get to feel all fuzzy. Good for you.” But I told myself that these people are all going through things or have gone through things that have changed their lives. I don’t know where they have been in life. Then I wondered if I looked horrid because of the looks of pity they kept giving me as I passed. And I don’t think that it helped seeing a note on a patient door asking people to leave prayers on the cart to the side. Plus to ask the nurse before entering.

I returned to the room in time to meet the research nurse. She had the new round protocol for me. Then it was time for rounds. They have changed rounds to being outside the door. The nurse practitioner had found that aprepitant interferes with ifosphomide, a chemo she’ll get after etopophos. Bummer 🙁 We worked it out where she’ll get ativan and zofran every 4 hours.

Jesse a little bummed she couldn’t come to rounds. And I think she’d have been able to hold her own 🙂 The fellow and nurse practitioner did say her main oncologist was coming by this afternoon. And they talked about her swelling groin. It turns out that the tumor is in the area of that right groin. When she up standing a lot, the blood flow is restricted in her labia causing the swelling. There is not much they can do about this. If the kidneys get larger, then they will replace her stents.

About 12pm, Jesse asked for yogurt and pretzels. I am hoping that when the etopophos final arrives all that food will stay down. As 1pm rolled around, the etopophos arrived. At the same time, Jesse’s class called to FaceTime. The nurse waited until Jesse was done before giving her the etopophos. This was a good idea. A few minutes in we had to give her Ativan to help her stomach, but that didn’t stop her from throwing up.

By 3:30pm, she felt like eating again. She ate a bag of popcorn and then 2 pieces of toast. The main oncologist came in while she was eating. He told us that the official reader of the scans still hadn’t read them. From what he saw the tumor looks stable. But we really need this chemo to shrink it further. If it doesn’t, then in his opinion we might have to put the stents back.

Jesse’s chemo finished around 5:15pm. An hour later everything she’d wanted to eat was back up. She is still fighting sleep. We have the ethanol to finish, and then she’ll be done for the night. For the last hour Jesse has either thrown up or grabbed the blue bag in case.