Day 67 at St Jude

Jesse woke at 7:30am, and stayed up. She is really excited about her dad and sister arriving tonight. I am just praying that we’ll stay on track for the 4th round of chemo.

At 9am, we walked over to St Jude. It is so convenient being at the Grizzlies House. Jesse actually wanted to walk the entire way to the isolation entrance door. I am really glad to see this because she has not wanted to really walk any length since November.

We went through the isolation doors, put on protective gowns, and the nurse took us through the halls to D Clinic. That part blows my mind too. She is on contact isolation, but we get to walk through the A clinic, then down the halls that are only about 3 people wide… to get to clinic. Hmmm, yeah that’s safe for everyone.

In clinic, our nurse and a floating nurse came in. The floating nurse treated me like a first timer. Love that. I didn’t bother to correct her, but I sense some judging from her. At least our main nurse in clinic seems to realize now that we’ve done this before.

The floating nurse got blood from Jesse’s lines. She insisted on using the red line. Doesn’t matter to me. The red line acted difficult and needed to be flushed with 10mls of saline before she could get a good blood draw.

She then explained how to do a sterile urine collection. Jesse mentioned having to pee. I figured this meant they would return with the yellow gown for her to wear. After 10 minutes, no one came back… Craziness. I found a nurse, got a yellow gown, and took Jesse to the bathroom.

Jesse is not crazy about the sterile urine catches. I have to clean her with betadine, then sterile water, and then dry. She fussed through it, but we were able to get it done.

I brought the sample out, but couldn’t find a nurse to give it to. The clinician saw me and said I could leave it on the med cart. I told her which bathroom we used. She commented that she wasn’t worried about it. I feel that she thinks Jesse being in isolation is a little ridiculous.

Fifteen minutes after returning to our room, the floating nurse poked her head in asking about the sample. I told her the clinician had already taken it.

She later returned with our schedule for tomorrow. Jesse has labs Monday morning right now, then at 9:15am, we have to be at the outside urologist for his recommendation about the stents. I really hope this is not going to mess up her starting the chemo on Tuesday. When I asked her about the labs scheduled for Monday, she went to check on them. Then returned to tell me they were part of the protocol and acted like I was complaining about having to have them done tomorrow. I was just asking what they were for since Jesse had labs drawn today. Sheesh.

The nurse practitioner came in to see Jesse. She is going to order more meropenem for Jesse and neuronton. I asked her about get the neuronton in pill form. She is different from our main nurse practitioner… so maybe I will get some where. I also asked for a pill cutter.

As we were talking the infectious disease fellow appeared. She said that Jesse’s urine sample from Tuesday came back clean and didn’t grow any cultures. They still want her on contact isolation, but she can go out in public. And now to get out of isolation, Jesse has to have 2 clean urine and fecal swabs once the meropenem is complete. I asked her if Jesse could go to the zoo this weekend, and she said absolutely. 🙂

From her opinion, Jesse’s stents are clear again, but need to either be changed or come out. And all of that will depend on urology. And in dealing with urology, they are outside of St Jude… and now we are at the mercy of their schedule. Oh let me contain my excitement. I am pretty sure at this point we are getting ready to get screwed on having Round 4 take place on February 25 through March 3. I don’t want to stay in Memphis longer… from what I have seen of this town, no wonder it’s population has dropped from 3700 people per square mile in the 1970s to 1700 people per square mile. (That fact was on the news last night as they are talking about having to close schools in Shelby County, which is the county Memphis is in)

The nurse practitioner left to see if she can get Jesse on pill neuronton. She also said that we can discontinue Jesse’s IV fluids. Jesse was so excited to be taking a break from Fred. A few minutes later she stuck her head back in the door saying she’d talked with the pharmacist. To put Jesse on the pill, we will need to increase her dose to 100mg 3 times a day. I am okay with this because Jesse is having a hard time with the liquid form due to the horrid taste.

She also apologized for our doctor having not seen us yet. He is the only one in clinic today. The child life specialist had told us that normally they have 6 pages of patients this time of year, and today they had 9. This is one patient name per line in 12pt font on a landscape printed page. I am surprised that they only have one doctor in the clinic at a time. These seems a little stressful for the doctor.

The child life specialist painted with Jesse for awhile before she had to leave to see other patients. Jesse found a book while we were waiting, “Llama, Llama, Red Pajamas” As I read the book to her, I realized this book is so her. I started giving her a hard time that she was the character in the book yelling for his mama, who was just in the other room. Read the book if you get a chance.

After being in the room for 2 hours, our doctor finally made it to us. He told me that he’d talked with the outside urologist. The plan is to consult on Monday. Then Tuesday they will take out the stents and not replace them. And Tuesday afternoon we can start chemo for Round 4! I did do a fist pump in the air when he told us 🙂

Once he saw us, the floating nurse came into remove the pump. She stayed with Jesse while I grabbed her medicines from pharmacy. The lady behind the counter recognized me, and therefore she and the pharmacist treated me like I knew what I was doing.

Jesse and I walked back to the Grizzlies house. Jesse ate 6 pieces of pizza. She has been walking around the room playing with her toys. She is enjoying the freedom of no Fred. The nurse practitioner called to verify how many meropenem eclipses we have left. When she heard that I was giving her a dose at 2am, she stopped me asking why I was doing that. I told her that I was told I had to keep the doses 8 hours apart. She told me I can give the meropenem at 8am, 2pm, and 10pm. That is far more convenient for me 🙂 This nurse practitioner is so on the ball. Every dealing I have had with her has been positive. I wish she could be our main nurse practitioner.

She also told me that an Interventional Radiology nurse had called to schedule Jesse’s stent removal time. This means the urologist is coming to St Jude to take them out. Yeah! And very nice of him.

At 4:30, I gave Jesse the last IL-2 shot. At 5pm, I started her meropenem. Unfortunately 15 minutes later she threw up everything she’d eaten. Not sure what upset her stomach. Might have been the saline or the fact I hadn’t given her zofran since 10am or the 6 pieces of pizza. She did feel better once she was finished, but hasn’t asked for dinner tonight. She hasn’t run a fever and does seem determined to stay awake to greet Mike and Chris. She did mention it was sad that Maggie had to stay home. I told her I was glad Maggie was there to guard the house along with ADT. 🙂 She’s funny. At home, she’s very protective. Campgrounds, she’s friendly. (and our neighbor Mrs Mayer is keeping an eye on things. She doesn’t miss anything.)