Day 48 thru 50 at St Jude

Day 48

On Saturday, we decided to check out the zoo. Jesse had a great time. Then we came back to RMH. Jesse wanted to be outside since it was 67 degrees. I wasn’t going to deny her. She checked out one playground and then decided to try another one.

At the second playground, she hopped on a bike with training wheels. She did a great job riding it except for a few times when she lost momentum.

A gentleman invited Jesse to get her face painted. She was really excited because she has been asking for face painting for a month. Not sure why she had that in her head.

Before dinner, we ran to West Memphis Kroger to grab supplies we might need for being inpatient next week.

Day 49

Since the weather was rainier and colder, we stayed at RMH. A group who looked to be associated with the military brought breakfast to RMH. Jesse was beyond excited because they had biscuits and gravy. I keep forgetting to look for the brand of gravy she likes at Kroger. Whatever brand these guys had, she liked too.

Melinda was really nice in helping us get everything ready to go inpatient. I cooked some food in advance for Jesse and I. We knocked out the laundry, and then watched AFV.

Day 50

At 6am, I was up to do Jesse’s meropenem. She had one more dose left, but she is supposed to receive the medicine through February 6. I wasn’t concerned because I figured we’d be hanging with Fred the pole tonight.

Around 7am, I went out to check on the car and load our bags. The rain from yesterday had frozen to the car, but it wasn’t difficult to get de-iced. By 7:10, we were on our way.

First stop was for labs. Jesse’s blood pressure and behavior in triage is horrid. I had wondered about trying to see if having the same person would help. I asked the nurse. She said we could do that, but it would make things difficult considering they had 153 patients they were seeing today. I think this is just going to have to be something Jesse gets over.

After getting her weight (she gained a little over 2 pounds) and height (40.98 inches), we headed to the cafe for breakfast. At first Jesse said she didn’t want anything, but then she tried the sausage gravy. She did say she wanted some of that, but she got an actual piece of sausage and that was it.

At 9:30am D clinic called saying they were ready to see us. We were not scheduled to be seen until 11am. Once there the nurse told us Jesse could do this chemo inpatient or outpatient. This does mean the tumor didn’t shrink to the point where we’d continue with the cyclo/topo chemo treatment. The two we have next are brand new to me.

The nurse practitioner met with us next. I told her about my concern at the amount of pain Jesse complained about over the weekend from the bone marrow biopsies. She told me that often the humanized antibody causes the bone marrow composition to change. This change can make it harder for the needle to get the sample they want. I wish they’d warned me of this prior to the biopsy.

She said the results from the biopsy were not back, and Jesse’s main oncologist is the attending on the floor this week. We opted to come back at 11am to see him. Plus hopefully they might have more information at that time.

Jesse was excited to go to class. And she beamed a big smile at me over the fact the class got to take a field trip to meet the new music child care specialist. After class she told Melinda and I about what they did. The letter of the day was B, and the class made bumble B’s.

We returned to the clinic after class was dismissed. Jesse was mentioning she was hungry. Melinda hung out in the room while I took Jesse to grab a snack bag. While we were gone the infectious disease fellow popped in. They came to look at Jesse’s left nephrosotomy tube spot that was red and painful on Friday.

The fellow was the first back in the room on our return. She looked at the site and felt between the meropenem and Jesse’s body, the spot was healing. She also told us that from now on Jesse will get meropenem as her first antibiotic if admitted with a fever. The bacteria in her body aren’t resistant to that antibiotic at this point. I am praying it continues to work for her.

They also want a urine sample next week to check on the bacteria colonies. If she has continued colonies, they might discuss replacing the stents. Being plastic, the stents can get a biofilm on them. If this is starting, the doctors think it would be best to replace them.

As the fellow was talking with us, the main doctor came in. He had not fully gotten her results back. They were waiting on the biopsies and the final measurement. He did tell us that since her tumor had not shrunk by 90%, she would be switching chemos. He also said it was very rare for kids to stay with the cyclo/topo treatment for all 6 rounds and that chemo was very hard on them.

I am very confused at this point. I asked to see her scans. I don’t have a good grasp on where all this tumor is. I know the original location, which factored into the 90% of removal. But being the attending doctor, he didn’t have time today. It actually was a little frustrating how harried he seemed, combined with the infectious fellow being there, and Jesse being still hungry and tired. I did let her open a package from Cindy, Mike, and Biscuit to maybe distract her. Thank you so much. Jesse loves the purse and gecko.

He did mention surgery saying that he was having the surgeon look at her scans. If they could remove anything, then this round would be placed on hold. But because Jesse has already been radiated in this area, he felt more than likely the surgeon would say, “Are you mad?”

I don’t have any grand illusions that Jesse will come out of this NED or cancer free (I hate that term… no such thing. And according to an article I read this weekend, we all have the cancer cells. Our immune systems do a great job eradicating them before we ever have to realize it.) And basically I left today’s visit feeling like we are just buying more time hoping that they find the magic switch to turn off neuroblastoma before it turns Jesse’s lights out. I pray that I am wrong and that Jesse grows up.

I also think the oncologist thinks I think that he will be able to get rid of all the tumor. I have no illusions of that. The location of it and the decision Mike and I made in 2011 mean the tumor around her aorta and vena cava will have to stay. I wish it would quit lighting up on the MIBG scans.

I did do a bad thing of asking what if we’d removed some of this is 2011 before radiation. But they were all quick to point out that that is the past. And had we removed any of it, we might be upset today because of feeling like we put her through a 13 hour surgery of scrapping for nothing.

I did have other questions I wanted to ask, but they were so rushed and Jesse was so over it, I didn’t get a chance to. I want to know will we have scans after this round? What does the cyclo/topo treatment do to kids long term (it’s working, why can’t we stay with this)? Since this new course doesn’t drop counts as drastically, how does it work? Where is her tumor at? How much was reduced? Why can’t we go in and remove the lymph nodes that are infected? What about her right labia? How long will we have the stents in her ureters? If this new course doesn’t work, will we go straight to the ICE ( i named chemo, carbplatin, and etoposide)?

After we finished up, we had a few hours before Melinda’s flight. We ran to Target really quick to get some supplies. If Jesse is going to be doing chemo outpatient next week, I don’t want to make her have to run to the store afterwards. Especially if she feels like crap.

There was a roadhouse restaurant nearby. As we were eating lunch, a lady threw up on the other side of the divider from us. Instead of asking if she was ok, her husband starts screeching at her about how she always does this in restaurants and cussing her. He then goes to get help to clean it up.

When he returned, I could hear her asking him why he had to tell them. I think he really embarrassed her. In fact I was really embarrassed for her. While she was in the bathroom cleaning herself up, he was busy pleading the case of her inability to listen to him about what she should eat to the couple a booth diagonal from them. It was awful.

We drove Melinda to the airport. It was really hard to say good-bye. Jesse balled after we dropped her off. I reminded Jesse how wonderful it was that she could visit, but that Jimmy, Emileigh, and Landan needed her. And that she would be back with her entourage in tow 🙂 We giggled a little because Jesse said Landan the Candian. This comes from poor Chris walking into the conversation at the wrong time.

We had face timed with them and Wendy on Saturday night. Jesse was telling Wendy about Justin Beiber getting arrested, and we all mentioned we didn’t realize he was Canadian. Christine walked into the room and asked in a surprised voice, “Landan is Canadian?” We all got so tickled at Christine having been in her own little world and her selective hearing. Love that kid, but her selective hearing is going to get her in trouble.

Tonight Jesse has been thanking me for staying with her. I am not sure how much of today she understood because she has asked me not to ever leave her. She did want soup for dinner and yogurt for desert. When she finished it was time to take out the ethanol/ placebo for the Ethel study. Later we talked to Mike and Christine.

Tomorrow at 8am, we have to be at the medicine room for her new chemos unless plans have changed. But since the medicine room called at 4:30pm today, I doubt that will happen.