I woke at 4:50am to the sound of Cummings diesel engine. Interesting enough it was the guy across from us. His dog had wandered over to our camp last night. He was obviously very uncomfortable… which made me nervous. He had made the comment that he was packing last night to leave. I figured that he was leaving last night… not at 5am.

The girls woke at 8:30am. Jesse couldn’t eat this morning because of sedation. For Christine, this is a hard concept to understand. I let her eat some yogurt.

The girls were raring to go so we left. I decided to go in the long way. This way I have a back way in case there is trouble on the interstate.I don’t plan to go this way again unless I have too. As we were making the last turn, our way was blocked by an accident that had just happened. Jesse began to worry we’d be late.

We arrived in the parking lot with 30 minutes to spare. But in searching for a place to park, it quickly became 15 minutes before our appointment. I had seen people park in the circle before. As I pulled in, a valet driver was walking by. He told me that he couldn’t leave the vehicle in the circle. And to go back to the gate I entered at, have the guard stamp valet on the tag, and bring the truck back to them.

After dropping the truck back off with the valet, we went into the isolation waiting area. The isolation nurse was out with another patient, so I had to call the radiation oncology clinic. And I messed up by calling the sedation portion. Because I called them, they started telling isolation they didn’t want to see us till 12. And isolation started saying they had nowhere to put us. And I started saying no one called to tell me that our appointments had changed… and everything on line shows an appointment at 10:30.

Luckily our clinician from D clinic was there. She called the radiation nurse, who came to get us. And when she arrived, she said they’d been looking for us because the radiation oncologist was ready to see us. Mind you I had arrived 10 minutes early for the appointment. Excuse me while I throw things…

The RO nurse took us to a room with a rocking horse. Jesse was on it immediately whipping her fedora like a cowboy hat. The RO (radiation oncologist) came in saw Jesse’s and stepped out to get his.

We talked briefly and then it was time to start the simulation. Because Jesse had to be in the CT machine for possibly an hour, she had to be sedated. The nurse and anesthesiologist were really nice… and finally after an hour the technician was ready to see Jesse.

When the technician came in, I asked how the process would work. It was then that I learned Jesse would be getting inked put under the first layer of her skin. I asked if it would eventually come off. And the technician explained that no it would not. They never used the word tattoo, but really that is what it is. She has 6 dots that look kind of like freckles.

While Jesse went for her CT Scan and MRI, Chris and I ran all over St Jude. We went by patient services to check Jesse’s mail. Thank you for the card Mt Pleasant Baptist Church. Jesse enjoys getting them 🙂

Then we went by security for a tag. I brought a different vehicle out here this time. The guard was worried I was pulling his leg. But I assured him I wasn’t, and told him that I would have my husband destroy the other one.

By 4pm, we were finally done. The kids were excited to head back to Jellystone so they could play.

On Tuesday, we hung around the campground. Since it rained in the morning, the kids were trapped in the camper. But by the evening, we could go down to the pool and playground. Found out from the people working here that Biscuit has been in communication with Jellystone. Thank you Biscuit, Cindy, and Mike. You guys are rotten 🙂

Wednesday, we relaxed until it was time for Jesse to have her practice for radiation. I am really trying to get her to do it awake. Jesse on the other hand is very nervous about this (mainly because she doesn’t know).

We arrived at 12:45pm. It took forever for them to get us from isolation. Mainly because they were trying to figure out where to practice. I really hope on Friday Jesse can see the radiation machine.

When they finally decided, the child life lady told Jesse she could pick out several books to listen too. They can’t put movies on a screen in the room because the machine blocks the view as it rotates. This often causes the kids to move their heads to see the screen.

Chris and I disappeared as Jesse walked into the room with the child life specialist. We took the old saline (not really “old”… St Jude has changed brands) to pharmacy.

As we returned, Jesse was standing in the hall. She was able to lay still for 15 minutes. I had forgotten to tell the specialist that Jesse would be on the table for 30 minutes. I made the mistake of assuming she would have a note with that information.

I pointed out to Jesse that she was at St Jude for a total of 60 minutes. If she has to sleep we will more than likely be there for 4 hours. I hope this is encouragement to get it done without sedation.

We returned to the campground, and I let the girls go to the pool. While they played I tried to get some work done. The staff here is very friendly. One lady came to hang out with Jesse while I tried to get the script done. I really appreciate their willingness to help me with the girls, but I also don’t want them to feel responsible for the girls. It is the reason I have a hard time asking people to watch the girls if I am going to have fun.

Chris was playing with an older lady in the pool. Jesse started to get frustrated about being stuck on the top step. And she lost it. I ended up making them get out and return to the camper where Jesse scream cried for another 60 minutes. Yeah. So wonderful.

I kept them in for the rest of the night.

Thursday morning we had several appointments at St Jude. First was labs. I asked the nurse if Jesse needed to give a urine sample. They told me one was not ordered. And I wasn’t thinking about getting a sterile one.

I gave the urine sample to the clinician at about 9am. She almost sent it as a sterile urine sample, which it was not. And this would have really caused a huge problem. The nurse practitioner stopped her and had her bring the sterile kit. I am glad in a way we botched the first sample. It is interesting that we get different nurse practitioners than our normal one, and they want to try and get Jesse out of isolation.

I asked the nurse practitioner about having a port put in Jesse. She felt it was fine at this point. When the doctor came in, I requested the same thing. He told me they were scheduling it for Thursday.

When he left, the physical therapist came in. He tested Jesse’s feet and asked her to walk around the room. He asked about the sensation that Jesse has been having in her heels. He isn’t sure that it is neropathy because she can walk on her toes. Most neropathy causes heel strike.

He did notice that she was pronating to the right. This could be caused by weakening muscles in her legs. And this pronation could lead to pain in her calves, knees, and on up the chain. He recommended that Jesse be fitted for braces.

We returned to the campground to discover that something is not right with our fridge. This is huge because of Jesse’s medicine. The campground staff was extremely nice to take the last dose and Jesse’s stool sample to their fridge.

I couldn’t get a hold of Mike until almost 5pm. He had me try to find the reset button on the back of the fridge, which I couldn’t. I must have touched something because on Friday morning the thermometer was in the right range. I have a repairman coming to look at it.

On Friday morning, I gave Jesse her last dose of ethanol.

We returned to St Jude for one more practice to hold still for radiation around 1pm. The parking lot was insane. The valet drivers had to park cars in the circle and along the wall into the parking garage.

Being in isolation is like being the kid no one wants to have anything to do with. I called radiation because they were our first appointment. After being transferred and put on hold, the nurse was on her way to gt us. When we arrived in radiation, the practice team was ready for Jesse.

The radiation oncologist was walking by as we were entering. He told us he had just approved Jesse’s plan. She will have 13 treatments, each lasting 20 minutes. This is good news, because Jesse can hold still for that length of time. And we will be able to leave on July 19th to head home! Yeah!

She saw on our schedule that Jesse had an appointment with physical therapy. She asked if we were going to D clinic. I told her this was the first appointment we had of the day, and I wasn’t sure. She said she would call and see. I told her I would ask because I needed to take a stool sample over to D clinic and ask about her schedule. The doctor had told me Thursday for the port placement, but the schedule is showing Tuesday (I don’t mind, just want to make sure I have the right information).

The nurse decided to call D clinic for me instead of us having to walk over there. I talked with the nurse about where we needed to go to meet the physical therapist. She told us either D clinic or A clinic, depending on who had room. The radiation nurse thought for a moment, then said why not stay here. And that does make the most sense. This way we “dirty” only one room.

At 1:30pm, Jesse returned with the child life specialist, who said she did an awesome job holding still. The nurse practitioner for radiation is concerned about how Jesse will do on Tuesday. Normally the kids have radiation first, then have surgery. This is in case they are uncomfortable and don’t want to hold still.

I am praying that Tuesday, they do the surgery by 10:30. This will allow Jesse to wake up. I can take her to get McDonald’s, then bring her back for radiation with a belly full and satisfied.

The physical therapist was supposed to see us at 1:30pm. Finally at 2:15pm, she appeared. She measured Jesse’s feet for the braces. These will be ones she wears in her shoes. Jesse is not overly happy about it. But when she got to pick out her design and strap color, this improved her opinion a little bit.

We returned to the campground. The kids played. Then around 8:30pm, I did Jesse’s last tape change (I hope it is the last). I had Chris tape it for us in case we ever needed that information again. It took me 19 minutes from start to finish to complete the tape change. Probably a good thing I have not been taping these because I would start racing myself.

Saturday, Chris woke me up complaining about her throat. I think she has what Mike had, and I am trying to get. If I can keep Jesse from getting it, I will be ecstatic. I need her to have this surgery so she can get the port and be free to swim, take a shower, even play in the dirt! Plus I don’t need to go deeper into isolation… I’d like to get her out eventually.

We left St Jude on June 16 to head home for our camper. I know I have left many people in suspense over Jesse’s scans. I am sorry for the delay. I had many things to get completed when we got home sine we will be in Memphis for one more month.

On June 16th, we were supposed to see our main oncologist at 8:30am. No appearance… and at 9:15, I saw him heading out the door in the opposite direction from us.

Our appointment with Radiation Oncology was for 11:15, but they were nice enough to move it to 9:30. (had to giggle because when we returned from seeing the radiation oncologist, we heard our main oncologist was looking for us)

The radiation oncologist had just stepped into our room when a nurse interrupted saying surgery was on the phone. He excused himself saying that he had to take it because those guys were hard to get a hold of. I told him I am the wrong person to say that too because of the trouble I have had getting a hold of people.

When he returned, he asked if I wanted to see Jesse’s scans. Yes, I would love to. I have been asking to see them since December. First he showed me the MIBG. Our home oncologist told me that looking at the MIBG was like looking at a 1950s TV screen. But on that screen there was no lighting up of the tumor sites. This means that the tumor isn’t putting out the hormone the radioactive isotope reacts with.

He then showed me the CT scans. The original tumor is shaped like a horseshoe around her spin. Her ureters are trapped inside the mass. All stuff I had been told before, but so different when you get to see it. The new growth has shrunk from 5cm to a little over 2cm.

The radiation oncologist (RO) told me they planned to stay away from the kidneys. And he would need a week to plan Jesse’s scans. She would need to be here for an MRI and CT Scan. He also said we could start treatment whenever we wanted. Since I want to be out of Memphis by July 25, 2014, we decided that planning needed to start June 23rd.

This did give me less time to get ready, but after 13 rounds of radiation, we will be able to come home. Also he is willing to try letting Jesse do radiation awake. If she can’t, they sedate their kids in order of age starting early in the morning. Brilliant!

After we finished with RO, we had to return to see the main oncologist. First we had to see the nurse practitioner. She told us that they are running low on humanized antibody. Then her next comment was “It’s a good thing you came when you did.” I told her we didn’t get to decide. The disease chose for us.

He is a very pragmatic person. He told me the tumor was not lighting up, but in his opinion if we were to do surgery, then we’d still find live tumor. He also said that surgery won’t touch her. Duh. Radiation from 2011 nixed that happening.

He suggested we continue some form of treatment at home. Either chemo outpatient or accutane again. (That will be easier this time cause she can swallow pills… but that also means return of the tyrant… )

I did ask about DFMO. In his opinion, there is not enough data to say one way or another. He has sent a patient to Nashville to be part of the trial. He said this is something I will have to talk with our home oncologist about since he will be taking over Jesse’s care again.

I asked about scans. He felt that maybe every other scan we could do at St Jude. I’m good with that. He also said that if her neuroblastoma relapses again, we probably will not be so lucky. She should have had the disease everywhere. Not just in 2 spots and her bone marrow.

He also asked why we were still in isolation. I told him to ask his people.

Finally by 12:39 ET, we were on the road to Virginia. And at 2am, we were in our house.

The next few days we spent getting everything ready to come back out with the camper. On Friday morning we left. Mike insisted on doing all the driving. We spent the night in Crossville, TN at a very nice KOA. The camp host owns a sugar glider (Australian flying squirrel that has to be very temperature controlled and is nocturnal), which he showed the girls. There was also a group of cheerleaders there. The girls made friends and really enjoyed the karaoke night.

We pulled out in the morning for Jellystone in Horn Lake, MS. As we pulled off the interstate, Mike was really impressed with how the area looked. After we set up the camper, we went out to have dinner. As we arrived at the restaurant, Mike wistfully commented that Jesse and I would have been much happier had we done this earlier. I wish I had thought of this sooner too, but I don’t think we would have been able to pull it off because of having to say in the hospital for at least a week during treatments.

This morning we got up early to have breakfast with Mike one more time before he heads back to our home. Dropping him at the airport this time was very different because Chris is staying with us. I’ll miss Mike, but I think the girls are not missing him yet because they have each other. By next week, this might be a very different story.

We stopped by Walmart to grab groceries. What is it about shopping that zaps my patience? I don’t think I got half of what I meant to get on the list because I just reached a point where I had to get out. As we were trying to leave, an employee stopped us. I guess this Walmart checks your receipts? But she didn’t instead it was on and on about how she loves St Jude’s. Then she gave us $10. I told her she didn’t have too. And she became ubberly insistent.

The girls did help me unload groceries. And Chris did a great job getting our food out of the cooler and dried off. Jesse held the trash bag for Chris. I think staying in the camper will be good too for teaching them to be responsible for their living space. (as we do at home… and I felt like I was loosing that with Jesse staying in a hotel).

I talked with Mike a little while ago. This is the first flight he has had to sit next to a very unfriendly person. He said she wasn’t happy to sit next to him, covered her face with a sweater, and complained loudly and verbally about hurting “someone” on the plane every time the baby sitting behind them cried.

June 13 2014

Jesse woke up during the night to use the bathroom. I woke up with her, but unlike Jesse, I stayed awake for two hours afterwards.

Around 7, I woke up realizing that I had slept through 2 of my alarms. Yeah. Jesse slept till 8:15. When she woke, she was ravenous. And not thinking twice about the CT Scan she has today, I fed her. She is supposed to not have any food or drink 4 hours before the test except for the contrast. The reason is when they inject the last dose of contrast into Jesse, it gives a warm sensation. This can cause her to throw up and potentially aspirate.

When I gave her the first dose of contrast at 9am, I realized the mistake. I called the CT Scan technician. Luckily she said we could back the scan up by 15 minutes. Whew. Read directions, must read directions…

At 10:15 Jesse and I walked over for her eye appointment. This went really, really quick. And it was obvious that C clinic didn’t want us sitting in their room waiting.

Jesse and I returned to the Grizzlies House to wait for 12pm. When we walked back into isolation, I had to call D Clinic because no one was at the desk. The secretary quipped that CT was calling her looking for us. No one called me. Why can these people not call me and ask where I am?

We walked back to CT, Jesse laid on the table, I put on a gown, and in 10 minutes the scan was done. Jesse and I left the building again.

Around 7pm, we decided to find somewhere to eat and get out of the room for a bit. We found Jason’s Deli. Really good food. Jesse had some mac and cheese. She told me at first that she wasn’t going to like it. I told her she needed to get rid of that attitude. She ate half of it.

After dinner, we did a little exploring. I have been wandering what was in the other direction from St Jude. We passed a bar with bikers hanging out, crossed a bridge, and were on the Mississippi River. There was a park on one side, and wealth living on the other side. We passed a golf cart party at the housing development sign. We also passed a party on a terrace. If I had guts, Jesse and I could have crashed both.

June 14, 2014

We decided to head out to Horne Lake, Mississippi today. Since we will return to St Jude for radiation, Mike and I have decided to bring the camper back with us. Yes we will have to pay to stay at a campground. But Jesse will be able to play outside and have space to run around.

At St Jude, Jesse can’t play on the playground. Even though her urine cultures have been coming back negative for bacteria this time, she can’t be around the other kids with compromised immune systems. If her sister was to come with us, they would both go nuts having to stay in the hotel room. Also we have no kitchen here to really cook. Having the camper, we would have a kitchen.

     When we exited I-55, it was amazing. There is a Target, Walmart, restaurants, and more all within 5 miles of the campground. We pulled into Jellystone and I was instantly impressed with how clean it is. There are not many trees and it does look like the campground isn’t that old.

Jesse instantly noticed the trampoline and 2 huge water slides. Then she saw the playground. She wanted to go play on them, but I wouldn’t let her until we went in to meet the staff. I had talked with a lady on the phone Monday, who was super nice. And the lady manning the desk was super nice as well. I am honestly very excited to stay at this campground.

Jesse was very impatient to get outside. She and I explored the campground for an hour before heading to Target. Tomorrow before it gets too hot, we might go check out the zoo 🙂

So behind in updating… and have lost count of days…

I decided to take some time off from posting because I was swamped with work, kids, house, and cleaning. Plus we were in a period of recovery with thankfully not much happening. And I was paranoid that I might jinx Jesse into a stay in the hospital 🙂

The good news while we were home is

1. No hospital stays for viruses, fevers, or extra bugs 🙂
2. Her ANC recovered 5 days faster at home than when we were here for Round 5. Meaning for Jesse less shots. Yeah!
3. And we gained weight (yes both of us)

On Tuesday, June 10, Jesse and I left Williamsburg at 6:30am for Memphis, TN. Turns out St Jude has a policy about flights. They will not schedule one for you if call after 14 days before you need to come out. This is actually a plus for us because I would rather have my vehicle with us.

We headed down 64 to 81, then onto 40. The only bad traffic we hit was in Nashville. And I am sure some people thought I had lost it after Nashville because I was whacking the dashboard with a bottle. For some reason I had 2 spiders in my car. I hate killing spiders, but they were building a web right in the windshield in my line of vision.

After driving through 2 rounds of blinding rain, Jesse and I arrived in Memphis at 8:30pm CDT. At the Grizzlies House, we caused a bit of concern. With Jesse being in isolation, we can only stay in suites and on the property. But the Grizzlies was completely full. The desk called the Medicine room, who okayed Jesse staying at the Crown Plaza for one night.

By 10:00pm, we were settled in. I wasn’t overly happy because Jesse has medicine that needs a fridge… and the rooms didn’t have a fridge. She and I filled the cooler with ice from the ice machine.

Jesse woke by 6:30am. She had been stressing about the bone marrow biopsy scheduled for Wednesday for most of Tuesday. We headed over to the hospital to get checked in through isolation earlier than we needed to. But I figured I’d rather wait over at St Jude’s.

The isolation nurse was surprised to see us. And many of the other nurses asked why were we still in isolation. A nurse practitioner (not our normal one) ordered a sterile urine catch in hopes she could get Jesse out of isolation. I appreciate her desire and effort, but it won’t happen. The exciting news of the day was Jesse’s weight: 15.9kg!! (and today is was up to 16kg. Yes!)

The same nurse practitioner did Jesse’s bone marrow biopsy. She did an awesome job. She only stuck her once on each side and Jesse didn’t seem to have near the pain she had during the last bone marrow biopsy. In fact, she has been running, jumping, dancing, and moving around a lot.

Our room at the Grizzlies was still not ready when we finished at the hospital. Jesse and I went to grab some lunch. We then planned to find a bookstore or library with free internet, but the Grizzlies called us as we were leaving.

They have put us in an isolation room, but it is the best one. We have 2 huge windows letting lots of light in. Jesse is scared in this room though. We are next to the washing machines for the hotel I think. Every time the water is let out, Jesse freaks.

On Thursday morning, Jesse’s first appointment was at 8:30am CT. As they led us into our isolation room, I overheard the staff saying they had 53 patients to see today. Normal numbers are 20 to 30. I am well aware this means a pressed for time doctor, if we see one at all.

About 10am, the technician arrived for the ECHO/ EKG. Jesse was a little uncomfortable laying on the table because of her biopsy sites. As he finished the tests, his phone rang. For some reason Jesse was not on their schedule. The person on the other end sounded to be chastising him for giving her an ECHO. I am just thankful it was completed before she was discovered to have fallen off their schedule.

Once he was done, they took us to Nuke Med for Jesse’s MIBG. The technician told us the test would take an hour and 15 minutes. She let Jesse pick out a movie to watch. Jesse did have some trouble being patient, but she did hold still.

We were then returned to D Clinic to wait for the doctor. We arrived at 11:45am. I went out to get Jesse a new drink and some food. The cafeteria felt like being in Walmart on Black Friday.

By 1:45pm, we had not seen anyone. In fact I don’t think the clinician told anyone she had brought us back because our clinic nurse stuck her head in the door at 1:45pm to see if we were back.

A different nurse practitioner came into see us about 2pm. She said she and a doctor (our main doctor was seeing his new grand babby) had discussed Jesse in great length.

Jesse will be getting radiation. And they already had the results of her MIBG. She told me they are not seeing an new uptake in the tumors. And she used the word no evidence of uptake. This is good, but I am very cautious. We still need to have the results of the CT Scans.

The nurse practitioner and I decided Jesse and I need to see the main oncologist on Monday morning. I need to know what the plan is. I am so tired of the loftiness and lack of communication around here.

Tomorrow Jesse will have the CT Scan and an eye exam. More than likely we will not know the results of the CT Scan until Monday. And to be honest I am not overly thrilled to meet with the radiation oncologist. He is the only one here who deals with neuroblastoma… and he has been gone for 2 weeks. The last time we met with him, it was obvious that communication was very lax between the departments.

Thank you Casear Church for the sticker books. Thank you Dr. Graham-Montaque and staff for the art kit. Jesse really enjoyed playing with it last night. Thank you Wendy for the color kit and Llama Llama book. Jesse has made me read it to her three times. Thank you Jonnie and Ken for the notebook and stickers. Thank you Knob Creek, Mt Pleasant, and Tabernacle UMC for the cards and well wishes. Thank you Mom and Louise Marie for the support.

Day 147

I woke Jesse up at 6:45am to make the trip to clinic. Because of traffic it took me about an hour and 30 minutes to get here. I’ll take it though because tonight I will be sleeping in my own house (even with the dog that pulled all the flowers out of my pot that I planted yesterday and put them on the porch.)

I am surprised that Jesse made it through the weekend. You could tell she wasn’t feeling 100% by Sunday night.

One of the doctors was walking to his office as we were headed down the back hall for isolation. He was very kind to let us in. And because her main home oncologist is working on the floor this week, he came to see Jesse. As the nurse was drawing labs, I filled him in on what Jesse has been doing, where the tumor is, effects on her kidneys. I did tell him about the one episode of diarrhea yesterday. (Luckily Jesse is back to normal today.)

He’s another great doctor. Listen, communicates, and told us back in the beginning that he and our home doctor argued over who would take care of Jesse.

About an hour later the nurse returned with Jesse’s counts: platelets – 3 (yes 3, just 3, only 3), red blood – 8 (I am totally surprised that held at 8. I really thought she was much lower.), and ANC – 0. I wasn’t expecting her ANC to start climbing… due to last time, I predict we probably have 10 to even 15 more days in the 0 range.

For her weight, Jesse has maintained at 15.6kg. I am a little bummed on that one because she ate a lot. In fact, she tore up the okra I fried last night. And ate 5 biscuits for breakfast yesterday morning.

While we were waiting the hour it takes for the blood to be ready in the blood bank, Jesse and I went down to the butterfly garden. Flashes of Hope were here today to take patients pictures. They asked Jesse if she’d like some makeup. I didn’t deny her. The lady put on some blush and lip gloss on Jesse. She absolutely loved it. No worries, the makeup artist is very careful to make sure she stays clean as possible.

The photographer took pictures of Jesse getting her makeup put on. And he took pictures with her looking in the mirror. Then he took some pictures with her by a bench and tree. After that Jesse was done. But she did trick me into taking a picture with her. I am surprised that she felt good enough to want to have her picture taken. And I did leave the decision totally up to her.

As the nurses were getting Jesse ready for platelets, a woman appeared in the window. She didn’t tap on the glass, but just stared at what was going on. I asked the nurse who she was, and the nurse thought I knew who she was. She had a green badge. Not sure if the nurse said something to her when she left the room.

About 11:30, they gave Jesse her pre-meds for blood. Platelets finished transfusing at 1:30. Tomorrow, we might need more because she dipped so low.

As we started transfusing red blood, the nurse commented on how hard she fights going to sleep. But by 2pm, Jesse couldn’t fight taking a nap anymore. She slept till almost 4pm before waking up. As she was sleeping our main home oncologist stopped by. He joked that he is upstairs this week if she wants to run a fever. I told him thanks, but no thanks. I have used the wipes that kill 99.99% of C. diff all over the house. He laughed as he walked away because we both know that no matter what I do… she will eventually get a fever and have to be admitted.

I had called St Jude about 4:30pm to make sure Jesse got her GM-CSF shot refills by Thursday. I was passed through 4 people before the 5th could answer my question. But I will give her credit. I didn’t have to tell her Jesse’s medical record number. She knew who I was.

At 5:10pm, I gave Jesse her shot. She screamed only a little. Then we changed her clave, and Jesse and I hit the road. She did want to go to some of Emiliegh’s game, but she didn’t last long. I think the mask is hot for her, but with all that dust flying around… she is wearing it.

Day 148

Today we returned to clinic for labs for the GD2NK protocol. When we arrived, the social worker was passing by. She stopped in to talk to us. She mentioned Jesse’s 3 platelets. I guess we were the talk of the clinic for only having 3 platelets yesterday.

I was starving, so I sat down in the chair by the window to eat breakfast. Jesse was sitting in the chair in the corner under a framed group of about 12 or 16 tiles clinic kids painted. She was eating pancakes.

When she left, Jesse asked me to move my chair over next to her as I have been doing other times. I slid her chair away from the wall. Then slid my chair in. As I was finishing, the clinician came in to get Jesse’s weight and vitals. Up to 15.8kg (woo-hooo!!).

I pulled my computer out and sat down. While I waited for it to start, I looked at the tiles in the frame. I actually had the thought of wandering where those kids who created the tiles are today.

I closed a program on my computer that likes to open when I start the computer, clicked on the wi-fi button to connect, and start working. Before I can even finish the click, there was a crashing sound and Jesse was screaming. I looked immediately at her. I saw the glass in her chair, and the picture on the floor. It dawned on me then that the picture was down. I honestly didn’t even feel it really hit my head… I guess because my first thought was Jesse. Plus I already had a sinus headache from forgetting to take my allergy medicine yesterday.

The glass from the frame was everywhere. All over my computer, which must have kept the picture from going more to Jesse, all over me, and all over the floor. As all of this is starting to dawn on me, the door was flinging open and everyone is rushing in. Poor Jesse was petrified, but lucky not cut. So thankful she was not cut or hurt physically in anyway.

A nurse moved Jesse from the chair to the bed. I think they checked her over. I was concentrating on not moving because of being covered in glass and staying clam. I figured if I freaked out, Jesse would freak out to. Plus I was trying to think of the best way to clean all the glass up without getting injured. Everyone was really nice asking if I was ok. And I am. I have a small scratch to my neck, a cut on my hand, and one on my thumb. None of them require stitches.

I am not good with emergency situations or being the center of attention. I joked that I have paid to be hurt worse by doing Rugged Maniac and GoRuck Challenge. To help Jesse, I joked that my mama always said I have a hard head. This made her laugh.

They got us moved to another room. I changed my shirt because of the glass that was all over it. Later on, I noticed I still had shards of glass in my head. No cuts, just glass.

People came by to check on us. I really appreciate their concern. I joked with them that I have a talent for getting injured in hospitals. The Child Life gentleman for the clinic made sure our drinks were replaced because we weren’t sure if they had glass in them. I feel really bad for him. He was so upset that the picture fell and hit me.

IT took my computer to their office to blow and vacuum to shards of glass out. The director of the clinic asked if I need to go the ER. I don’t, and told her so (nicely 🙂 ). She told me that she would have to put in her report I refused treatment. My thought is great now I have an incident report at St Jude and CHKD. :/

The clinic also called maintenance to come remove all the pictures with glass in them. I am really lucky that I wasn’t hurt worse. I am also glad that I was the one the picture hit. I will heal. If it had hit Jesse or another kid, that would have been horrible.

After awhile Jesse’s counts were back. Her platelets are 36. The doctor suggested waiting until tomorrow to transfuse Jesse with platelets. Her blood is great. And he feels she should stay on potassium for now. To help me out, the doctor went ahead and ordered the platelets for tomorrow. Jesse will have labs checked, get the transfusion, and we’ll be on our way. I really appreciate them doing it this way.

Jesse and I headed out the door at 11:30am. She has eaten two servings of spaghetti for lunch.

Day 141

We started the day at 7:30. I had requested that Jesse’s labs be checked on Tuesday in case she needed platelets or blood. We arrived at the isolation door at a little after 8. Another family was inside the holding area waiting. I called D clinic since we didn’t see the isolation nurse.

As we waited, 3 other families joined us. It was twenty minutes from when we arrived to when someone arrived to let us in. Mike luckily took Jesse outside to wait. With many people on droplet protection… it’s a little scary to wait in that area.

Jesse’s labs returned really well. ANC 2500, platelets 77, and red blood 11. With her numbers being this good, we were released to the Grizzlies House to wait for the phone call about Jesse’s natural killer cells.

Before we left, the research nurse stopped by to see what she could do to help us with leaving. She is helping us while our main research nurse is on vacation. I like her because she is trying as best she can to help us. I asked her if she could find out what time the infusion would happen. I seem to have the success of calling the transplant coordinator when she is not at St Jude…

I ran to pharmacy to pick up some medicines that Jesse would need while Mike took her to the room. While I was waiting, the coordinator called me. They were still planning to give Jesse the cells at 7pm. Mike and I had talked about if that happened I would get the rental car earlier.

At 2pm, it was time for Mike to head to the airport. Even though we kept telling Jesse she and I would be leaving after 9pm to head back to Virginia, she still cried. She was interrupted by the cab driver calling to say he was here to pick Jesse and I up to go get the rental car.

Once Jesse and I got the car, I took her to McDonald’s. I know that fast food isn’t considered healthy, but I am extremely surprised that St Jude doesn’t have something like that on the property. The cafeteria is okay, but when it really comes down to it… I see very few kids eating in there. It is mainly employees I see eating in there with parents sprinkled about. And I find it interesting there is not a food store closer. But the trouble is with the condition of the area, I don’t know if it would be safe to use.

Jesse and I returned to Grizzlies to wait for the call about her infusion. By 6pm, we’d heard nothing. I loaded Jesse up, finished cleaning the room out, and headed to the Medicine Room via Isolation.

Fortunately the nurse we had was the same one from a few rounds ago. I explained what we were trying to do. She told me that she called them at 5:15pm to let them know we weren’t there yet. Not sure if that means the cells were ready then? I wish that place would just call me.

By 6:36, the cells were infused. Jesse was getting really impatient. And from the way she started talking to me, I was pretty sure she was going to pop a fever. Amazingly she didn’t, and at 9pm we pulled out of St Jude’s heading east.

Day 142

By almost 1am, Jesse and I were on the other side of Nashville. She slept a good deal of the way. I drove and scratched my feet. I have gotten into some gluten food the last 10 days. It is hard for me to eat at St Jude or even CHKD. The cafeterias only really offer the salad bar as gluten free… and that isn’t really cost friendly. Yes St Jude does carry the gluten free bread. I haven’t asked here at CHKD yet.

Jesse and I arrived in Williamsburg about 11:30. After dropping off the rental car, we went home. I tried to sleep, but that proved difficult with Jesse. Mike had to work late, but Chris was very happy to see us when she got off the bus.

Day 143

Jesse had labs at CHKD this morning. Her weight was 15.1kg (at St Jude it was 14.6kg). She did need blood and platelets.

I was concerned that Jesse was going to be admitted. Her temperature kept getting close to the admission point of 38 degrees Celsius twice in one hour. She reached 37.9 degrees Celsius at one point.

I called Mike and asked him to bring Jesse’s medicines just in case. He also brought her some soup.

By 5:45pm, we were on our way back home. As we drove, Jesse talked about wanting to go home. But when I told her Chris was at her softball game, Jesse changed her mind. We made it to Chris’ game with 9 minutes left.

About 9pm, I checked Jesse temperature. She was 100.3 degrees Fahrenheit. But after reaching that point she seemed to come back down.

Day 144

Today was a quick trip to Norfolk. Her platelets are 63 and red blood is 10.2. Her weight was 15.6kg. At this point last round, she was dropping weight. Praying that holds her till Monday. And a tad scared it won’t.

After tape change and labs were done, Jesse and I headed home. I do wish that CHKD would improve their internet access. It is very frustrating to attempt to work on. I need to figure out who is the right person to write a letter to. And if they are worried about a parent suing them because their kid watched content they should not have (which is stupid in my opinion), then have people sign a waiver.

Day 145

I let Jesse sleep in. But she woke me at 3am wanting water. Then she was up again at 6am. She then went back to sleep until 8am.

She has been a little cranky, but otherwise did help pick up things around the house. I went on a cleaning spree. It would be so nice to have one round of treatment out of the hospital.

In the evening, we went to Jimmy’s surprise birthday part. Jesse didn’t make it for Jimmy to arrive because she wanted chicken noodle soup and was exhausted. After running to the store for it, Jesse ate 1.5 cans. And by 8:30pm, she was asleep.

Day 146

Chris kept waking me up every few minutes with Mother’s Day poems. Can’t wait till she is a teenager and wants to sleep in. I know she was excited.

We ate breakfast. Jesse has been eating really well since we have been home. After breakfast, we ran to Home Depot to get plants for our garden. Jesse was able to hang with us for about 30 minutes, then she was done. I think that her mask plays a big part in that. It is miserable to have to wear it when it is hot outside.

Jesse and I returned to the house will Mike and Chris finished shopping. She has discovered Gilligan’s Island.

Day 139

Mike arrived about 11am. Jesse was so excited to see him.

The hospitalist told us Jesse had 75 platelets, 10.7 red blood, and 2.6 white blood count. Her weight was 14.3kg.

At 12:30pm, we started the last dose of antibody. For a day here, it was really mild. And by 6pm, we were released to the Grizzlies House. Jesse was so excited to get out.

Day 140

This place is crazy busy… and I am sure that half of the patient population is in isolation. Mike left for his aphresis at 8:15. I had my staff meeting and did some work. Jesse actually ate half of a muffin.

At 10, the clinic nurse called asking where we were. She sounded a tad harried. Our appointment was not until 10:30, but Jesse and I headed over to get the labs drawn. And the labs were not due to be drawn until 11:15, but because the rooms were filling up she asked us to come earlier.

The isolation nurse looked totally exasperated. She was out of rooms in the back. And she told me there are 8 upstairs in isolation. What is really scary is most are droplet. I have got to get Jesse out of here.

In clinic, I asked for the sterile urine cup and a regular one. I am trying to prevent the yo-yoing this place likes to do. But the nurse practitioner nixed ordering it even after I collected it. I bet she is planning one for Wednesday. I will not be here Wednesday, and neither will Jesse. We will be home where is it safer. All stuff I talked about with her last week. So frustrating to have that conversation totally ignored.

Amazingly Jesse’s weight was up from 14.3kg to 14.7kg. Little concerned the scale in the clinic is off.

The nurse practitioner came in around 11:30 to talk about Jesse going home on Tuesday. As she was looking Jesse over, her labs came back. Jesse’s platelets are actually up from 75 to 77 and so is her red blood (10.7 to 11.4). I asked to have her labs checked tomorrow to make sure she didn’t need a transfusion before heading back. The nurse practitioner also mentioned that radiation oncology was waiting on scans from Sentara. And when I asked for more information and if I needed to make a phone call… it was vague answers.

After she left, I tried going back to patient services. I had tried earlier in the morning, but the line was down the hall. Before running to the cafeteria, I went to check on Mike. He was halfway done by this point. The bag holding the natural killer cells looked really full. Mike told me later that the extra killer cells the harvest from him are given to other kids that need them.

Back in the room with Jesse, she and I waited for the main oncologist. While we waited I called rental car places for prices. Amazing that one company charges double what another company does.

At 1pm, we had not seen the main oncologist. Little perturbing considering we are heading home. Gives you more of that written off feeling (no worries, I tracked him down later… will explain when I get there). A little after 1pm, I asked about our appointment with the radiation oncologist.

It was 1:30pm when we were moved to radiation isolation. The fellow who came in was an interesting character. She did a great job of not listening to me and cementing that radiation oncologist live in a very different world from chemo oncologists. I told her she just finished ICE chemo, which was the last of 6 rounds of chemo. She wrote down 6 rounds of ICE chemo. I can see where she would misunderstand me. And I don’t think Jesse fixating on her facial birthmark helped either.

I asked her about proton versus radiation. She said, “You mean photon?” I don’t care what it is technically called. I know it’s x-rays (thank you Madame Curie). And at this point I just want to know which is better for Jesse, which one packs the biggest punch, and can we do this without sedation? Since I needed to get somewhere, I just started calling it photon therapy. She did explain the photon therapy could be shaped easier to hit the tumor than proton therapy could.

She left to go talk with the doctor. I have the feeling there was a deal of misinformation. When the doctor came in, a nurse joined us along with the fellow. They mentioned not having the records from Sentara. I asked them if they were having trouble getting them. The nurse then back tracked in such a way that I feel the ball has been dropped by St Jude.

The radiation oncologist talked about doing 18 rounds of radiation talking 4 weeks (turns out they need 7 to 10 days to set up the radiation machine). He mentioned hitting the new spot and the old spot. And that each round would take 30 to 40 minutes.

He then mentioned we had another round of chemo. This was big time news to me, and I did kind of flip out a little. I told him we had heard nothing about this other round. Then he mentioned we’d start in one to two weeks with radiation. This was completely different from what I have heard too. Jesse will not have any ANC… there is no way she can start radiation in 1 to 2 weeks. I told him she would not have any ANC for probably 3 to 4 weeks.

I asked him about the proton therapy. He mentioned that we might have trouble with that one because Jesse is a relapse. Proton places will probably not want to treat her. I also asked about doing this with no sedation. Last time Jesse had radiation, the back of her tongue turned black and food had no taste or a metal taste. My hope with no sedation is that Jesse will have more chances to eat. He said we could try it, but he didn’t seem too keen since she would have to be on the table 30 to 40 minutes.

They plan to shape the “photon” to hit her original tumor without hitting the kidneys and spine too much more. I should have asked if the radiation machines here deliver lower doses because this is kids.

He left a few minutes before Mike called to say he was done and locate us. Mike walked in the room a few minutes before two nurses from B clinic came to take us to the 4th floor B clinic. Poor Mike had a cold pack on his arm. Twenty minutes before the aphresis was done, the return line came out of the vein in his arm. Mike said it was painful, and from the swelling in his hand and arm, it looked painful.

Upstairs in B clinic, we were deposited in a room. These are rooms that used to be patient rooms. And when the new addition to the Chili’s Care Center is done, the 2nd floor of the main hospital will become patient rooms too. From the way I felt sitting up there today… I am concerned this is more opportunity to just deposit people into spaces to wait. The plus being they have their own toilet and a TV. The downside, I can see sitting there, forgotten for hours.

Jesse actually freaked a little. She was concerned that she was being put back in the hospital. After 30 minutes the physician assistant came in. He told us that Jesse would get Mike’s cells at 7pm. Not happy about being 7pm… I get so tired of this place thinking that I should be waiting on them to call.

The physican’s assistant returned with the doctor. I asked her if there was anyway to move the time up. I explained that we are planning to leave Memphis as soon as the 2 hour wait period after the natural killer cell infusion is done. Here’s to hoping…

While Mike and I were waiting on the doctor, I told him what the radiation oncologist said. The more I thought about what he said the angerier I got. I feel like this place makes decision without communicating with me. I am so tired of not being included in the conversation about the child I carried for 10 months.

Mike suggested I go back to D clinic and talk to our oncologist, especially since he didn’t come see us today. At first I said no that he’d just say he can tell me anything till scans are done next month. The more I thought about it, Mike was right. When he and Jesse headed back to the Grizzlies, I went to D Clinic.

On my way I ran into one of the wonderful nurses from the Medicine Room. She listened to me vent. And gave me some great advice. She said to keep pushing for what I felt was right. Don’t let them push me around. (Funny they were celebrating Compliance Week starting today… I am sure it is compliance for something else, but with the way we are treated here it feels like they are further trying to mold us into what they want. Parental zombies lurching through the hospital agreeing to everything with moans…)

The oncologist was seeing a patient upstairs. I talked with the nurse practitioner first. Without Jesse present she actually talked to me like an adult. And she mentioned burning Jesse’s scans to CD. I am very frustrated that no one can tell me the success level of treatment. Today radiation said the tumor had beautiful response. What is beautiful response? That is not quantitative. Why can’t anyone give me a quantitative answer. When I ask, I feel like I get put off.

I sat down to wait in a room. About 15 minutes later, I heard very loudly, “Where is Jesse’s mom? Did she leave?” I stepped out in the hallway saying “Hi, I am still here.” Sheesh.

Meeting with him did give me some answers. The plan currently is for Jesse to return for scans on June 12. We are done with the protocol. Until scans are done, we won’t really know the next step. They are thinking about more chemo. And they are even thinking about more antibody. If we do antibody, they will have to present to the FDA. And that will be a long, difficult process.

When I left him, I ran to the pharmacy to get Jesse’s medicines. Today Jesse starts the il-2 shots. I also needed to get neuronton, ethanol, GM-CSF, saline mouth rinse, and sodium bicarbonate. The nurse practitioner had called me to let me know that Jesse needed to start taking it again because of some electrolyte loss. Guess which medicine was not there… So back to clinic to ask them to order the sodium bicarbonate.

I ran down to check Jesse’s mail. Then to take home supplies to get a few supplies I needed.

Back at the Grizzlies, I gave Jesse her shot and started the ethanol study for today. The oncologist called. He had talked with the radiation oncologist. Turns out the guy totally misunderstood that Jesse was done with the protocol. He said we have three options:

1. Radiation preparation takes 7 to 10 days. Jesse and I could come at the end of May for a few days of simulation, plus CT scan and MRI. Then return for scans in June and stay for 3 weeks of radiation
2. We could wait to do the simulation when we come for scans in June. Then return home for a week before returning for 3 weeks of radiation.
3. See if the radiation oncologist at Sentara will see her again. And we could work out a plan of treatment that takes place there.

He then asked which I was leaning towards. I was honest with him. I told him I am leaning towards home because Jesse eats better there. I have another child at home I don’t want growing up resenting me because I have been gone. Plus being in isolation is depressing for Jesse. She can’t participate in anything here. At home at least outside the hospital, she can pretend to be a kid, not a sick miniature adult (or prisoner… locked away from the sun).

I am torn though. Should I do radiation at home? Or should we return to St Jude? Would it be better for her physically to get the treatment here? Spiritually, I know she would do better to get it at home…

Thank you Mt Pleasant Baptist Church Tuesday Morning Bible Study Group for the card. 🙂

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.

Jesse was up at 7:30am on her own even with us waking her every 2 hours last night to pee. The night nurse was awesome. She suggested a portable toilet next to the bed to make life easier for Jesse and I. She also let me sleep through some of the wake up times. On the ones were she needed an extra hand she woke me up, which I am totally fine with. Plus she treated me like a partner in Jesse’s care and I didn’t feel judged by her at all.

At 5:30am, I woke up and saw they needed a urine analysis for Jesse. I got that for them, and dosed back off. The urine analysis has to be run 4 hours before Jesse’s chemo starts. And I didn’t want anything to delay the start of chemo.

When Jesse woke at 7:30am, she wanted a banana and Coco Puffs. She had asked for a banana at 9pm here, but the cafeteria closes at 7pm. Not exactly the most convenient time for kids who have been drugged or doing treatment all day.

After she ate, the nurse practitioner stopped by. She started telling Jesse how she needs to wipe. I stopped her short telling that it was a waste of time right now because Jesse is on ativan. Last night Jesse argued with me that the freckle on the palm of her hand was dirt for ten minutes.

The nurse practitioner still talked about Jesse getting out on Sunday night, returning for appointments on Monday, getting the transfusion on Tuesday, and leaving. I asked her about an appointment to have Jesse’s labs checked. She looked at me clueless. Really? Her counts are lower starting this time than last time. Her counts need to be checked on Monday. If she needs blood or platelets before we leave on Tuesday, this needs to be done for her protection.

I feel that since I am tired of playing their game, I have been written off and so has what is best for Jesse. The appointment with clinic on Monday should be schedule already no matter what. I have spent so much time here fighting for things to happen to make sure Jesse is kept as safe as possible or to help her.

The main oncologist thinks her radiation should occur here because “this is the best place.” After the way we keep getting treated, I strongly disagree this is the best place. They have an extremely skilled marketing and fundraising department, who if hired by anyone running for President could get that person elected with a ton of money left over.

The nurse practitioner left, and at 9:30 the nurse came in to start etopophus. After two hours, she started the ifosphomide, and she started the diluadid pump. This has, of course, made Jesse feel more loopy.

The research nurse stopped in to give me a copy of the fax she sent to our home hospital. So happy that CHKD is willing to draw the research labs giving Jesse to come home. This place feels more and more imprisoning the longer we are here.

Before the antibody began a volunteer stopped by. I keep telling myself “They mean well, they mean well.” But I can’t stand the high pitched voice that some talk to Jesse in. She played with Jesse for awhile, and I got the impression she wanted me to talk to her. But I was not really interested in having a conversation with her.

About 2:30, half way through the antibody, Jesse complained that she could not breathe and her throat itched. I am wondering if the milk I let her have for breakfast played a part in the trouble. Of course with this happening, a flurry of activity followed. I asked the nurse practitioner about get her adarax. This is a drug Jesse has had in the past when her throat has itched even while on the diluadid. For some reason this time she wanted to give her claritin. I asked why the change in medicine. Of course no response. Then when I asked again, I was given the response that it could make her drowsier. My thinking is why are we worrying about that now at Round 6? Should we have worried about that from round 1?

The social worker was here to witness what happened. She had stopped in to check on us. I told her I was trying to contact the transplant coordinator for a time of infusion on Tuesday. She had been making calls for me to see if she could find out a time. But when Jesse started having trouble that all got put on hold.

From the look on Jesse’s face, the diluadid was doing a great job of trying to knock her out. And it was the same look she had while the volunteer was here saying out loud, “She needs a nap” and Jesse saying, “No I don’t.” And by the time 3pm rolled around, Jesse was claiming not to know who I was, who she was, or where she was. The nurse put heart and respiratory leads on her, plus the pulse ox to watch her oxygen.

Before they gave her the claritin, a respiratory nurse came to start the oxygen Jesse asked for. Jesse tried to refuse taking the claritin in favor of just having the oxygen, but I told her she had to take it. At 3:30, we started working on trying to get Jesse to pee. But with the diluadid, she does feel the need to go, however she is retaining it.

At 4:15, we were interrupted on the toilet by infectious disease. They want to keep Jesse on the nitrofurnation because it might be helping her. We won’t really know for quite some time. As for the bug, we don’t know what that is either yet. The infectious disease fellow had to have the lab “rescue” (her words… guessing that means it was getting ready to be destroyed) the urine culture. The lab doesn’t normally test unless the colonies are over 10,000. But since Jesse keeps recurring… they are going to test for what it is and what it is resistant to.

The infectious disease doctor told me to not expect Jesse to be out of isolation for quite sometime. I figured as much… and really wish they had not teased her Monday with that taste of freedom.

As he was looking at Jesse, he really became concerned. He asked if a CBC (blood chemistry looking at ANC, red blood, platelets, and more) has been ordered for Jesse in the morning. The nurse looked in the computer telling him no one had not been. He left the room saying he would mention to the nurse practitioner she needed one. I like the infectious disease doctor. From him, I get the same feeling I do about our home oncologist. Both want what is best for Jesse and are genuinely concerned about her care.

Once they left, I tired to get Jesse to go again. The nurse even brought hot water for her to put her hand in trying to trick her to pee. At 5pm, Jesse fell asleep. Around 6, I sat her on the portable toilet. Thankfully she went. As she was going, the nurse was trying to make sure the nurse practitioner ordered Jesse’s CBC and cut the basal rate. Surprisingly she was still here and did do both. I was really concerned that she had not ordered the CBC because we talked about it at 4:15pm… and it was 5:55 before she ordered it.

With all the trouble getting her to go, the nurse practitioner agreed to move her to fentynol. And agreed to cut the basal rate overnight. We are going to see how Jesse’s plain goes. Right now getting her to pee is a big deal. Fentynol doesn’t cause as great a urinary retention. I am a little perplexed though… what could have caused diluadid to snow Jesse so much today?

We only boosted her once before starting the antibody. She only hit the button one time because her left leg was hurting. And she refused that for as long as possible because she hates the feeling diluadid gives her.

About 6:45pm the attending doctor came in. I am really impressed that he stayed so long to make sure he saw everyone. He agreed about having the CBC done, and even suggested one for on Saturday morning. He had no trouble letting Jesse be released Sunday night for appointments on Monday and Tuesday. And I told him since she was never going to get out of isolation here, I didn’t want her to stay. He totally agreed with that reasoning.

Tonight we have the same awesome nurse, who is going to draw Jesse’s labs at 12. If she needs blood, she’ll get it on night shift. And since her heart rate is now hanging out in the 160s, I will be surprised if she doesn’t. And tomorrow we have the another awesome nurse, who has been with Jesse for the last 2 days.

Jesse slept till about 8am this morning. We’ve ended up with a room with 2 windows in it, but with the cloudiness the room is dark.

Chemo was schedule to start at 8am, and except for a little trouble with the pump, we were on time.

The carboplatin ran for an hour. Then it was time for the etopophus. Because of Jesse’s last reaction this ran for two hours. Luckily Jesse had no reaction. While we were waiting the nurse practitioner came in to check on Jesse. We might be able to leave on Sunday to the Grizzilies House. Then Monday go to Jesse’s appointment, Tuesday get the NK cells, and leave.

After the etopophus, Jesse got ifospomide over 1 hour. This ended chemo for the day. Jesse is now finishing up the ethanol locks. While it was finishing, I ran to get Jesse an orange. Sometimes it is faster to catch her hunger if I take care of it myself. By the ABC wall, someone had left water in the floor. I found it, slamming down on my right knee. I’m fine and have had worse bruises. I am extremely thankful I found it alone and that someone else didn’t find it.

About 2, the nutritionist came in to check on Jesse. She didn’t stay long.

After awhile the research nurse stopped by. She is coordinating all the labs that will need to be drawn while we are home.

The child life specialist stopped by to see Jesse. The attending doctor poked his head in the door about the same time, but said he would come back. (It’s 5:24pm now… I doubt we’ll lay eyes on him again.)

Then at 4:30pm, the shoe fell. I knew they’d put her back in isolation. They put her back in isolation because of a gram negative lactose fermenting bacteria that so far has only grown 5000. But since they think it might be klebseilla again, she is back in isolation. While this might be good in order to keep her safe, it has crushed her spirits.

When the nurse practitioner came in to talk about it, it was the blame game. It’s my fault because I took her home when they had a sterile urine catch scheduled for April 23rd. Why this could not be passed onto our clinic at home is beyond me. Why couldn’t they ask our home office or tell me about it? I am so angry with this place and lack of organization and communication.

I told the nurse practitioner it should have been taken on Monday at 8am when I asked for it. They fail all the time here to read their notes in the computer. If they would read their notes, they would not devastate a girl’s freedom. Jesse was so looking forward to walking around the hospital with me.

We will have to wait until tomorrow for what it is. Then we’ll have to wait for infectious disease to have time to come see us, which might not happen tomorrow at all. I personally want a plan of action. I do not want Jesse in the hospital after round 6 because of a fever again. I also want to know if this bacteria has mutated to be resistant to the nitrofurnation, which is supposed to be sterilizing her urine. I am so tired of the run around. I don’t want Jesse on clydamycin because of the C. diff potential.

This has started Jesse back on the path of crying for her dad and sister. The potential of being able to leave the room had kept that at bay. I have held off letting her leave because I had a suspicion and because of the nausea medicines, Jesse is a little loopy. She did complain earlier in the day of her stomach, but by the time we got the phenegran changed from being taken by mouth to IV, it had passed. The nurse practitioner had written it for by mouth. How well does that work when someone is nauseated?

Later on her dad called to let us watch Chris’ play at school. Thank you to the Carlsens’ so much! As they called the attending doctor came back. I will give him points for coming to see us at 5:40pm. He kind of got an earful from me, but yet again he is just the person in the middle. I should have been brave enough to ask the nurse practitioner what her deal is. Why she can’t get organized…

More than likely we will not find out what this is until Friday… and then they won’t probably come talk to us until late. Frustrating.

Right now Jesse is learning to play Temple Run… and feeling a little frustrated.