Day 93-94 at St Jude

Day 93

Jesse was scheduled for school at 8am. That went really well waking her up. And by 8:30am, she was over doing school work. She did manage to hang in till 8:50am. Then we returned to the Grizzlies to wait for her 1:30pm MIBG Injection.

While Jesse was in school, I went to Patient Services to find out what would happen to us when isolation ended. They couldn’t give me an answer. I have a feeling we’ll be kicked to RMH in time to go back inpatient because of surgery (if they do the surgery) and roll into Round 5 of GD2NK. And from that I.C.E chemo we’ll end up staying 3 weeks because she can’t leave until her counts reach 500 ANC if she runs a fever.

I joked with my cousin last night that at least I have my car in working order now (just have to worry about gas since they are having a shortage of gas in Memphis). Jesse and I can always by a tent, propane campfire, and maybe car refrigerator for her medicines. Now to find the perfect spot on the St Jude campus. Wonder how it will go over if we camp on the grounds of the gold domed building. Or we could always live on the porch of the main hospital. Has access to toilets and fridges.

Jesse on the other hand is very concerned about the bone marrow biopsies of today. She remembers the pain she felt afterwards from last time.

Thank you gifts Elsie and JC for the shamrock necklaces and headband. Thank you Ruth for the shirt, hello kitty activity, coloring books, and Canada light up bracelet. That will be really handed at the campgrounds. Thank you Ruth’s church for the cards. Thank you Field family for the Amilia Badelea books and coloring microphone. Thank you Billy and Yvonne for the stickers and card. Thank you Aunt Carolyn and Uncle Jerry for the scrapbook. Thank you Mount Pleasant Baptist Church Tuesday Morning Bible Study Group for stickers and card. Thank you Hattie for the bear card.

Day 94

Jesse has been asking me on the minute when will it be time to go to clinic for the bone marrow. She is really scared about having it done. I need to make sure that her oxycodone was ordered to help with the pain.

At 10:30am, my phone rang. It was her nurse practitioner. She and the doctor had been looking at her CT Scan. They noticed her kidneys had enlarged. This scan was then sent to the urologist at LeBonheur for his opinion. He felt she should have the ultrasound today to see if maybe her bladder was weakening.

During her phone call I found out Jesse is going inpatient tonight to start the next round of chemo/ antibody tomorrow. When I asked about surgery, she couldn’t give me an answer. I am so angry at this place and their secrecy. They hid behind closed doors in clinic with 3 people left outside as the front line.

I was able to ask her if the tumor was squeezing the ureters. She only told that the tumor was responding to treatment.

A few moments later the scheduler called to see if we could be at the main hospital in fifteen minutes. I told her we could, and she told us to go to Chili’s Car Center. I told her that we couldn’t do that because Jesse is still in isolation. Her comment was “Oh yeah that’s right.” I wonder if there is something that should appear on their computer to let them know that doesn’t.

I finished packing a few of our belonging, and then Jesse and I hot footed it over to the main hospital. I will admit my blood pressure was boiling at this point. I am so tierd of being kept in the dark over what is going on with my child. I am tired of the closed doors and hidey-holes they have in this place. (I don’t want to know other patient’s business… I want to know my child’s business so that I can keep her alive.)

I am also tired of being treated as incompetent. The nurse practitioner asked me how often Jesse goes. I have noticed that she goes about every 3 hours and a good amount. To me it sounded like in her voice she didn’t believe me.

The isolation nurse was surprised to see us. No one had bothered to communicate with her the change. I told her that if these people making the decisions had to live in parent’s shoes for a month or two they’d have more empathy.

She gave us our schedule. On the schedule was finally the times that Jesse wasn’t supposed to eat or drink. Yeah not convenient because we don’t get that schedule till the day of the sedation. Thankfully I had not allowed Jesse anything to eat after 8pm last night, and no drink after 8:30am.

We arrived at clinic at 11:10. The clinician came in for Jesse’s vitals. Jesse asked about having to do a sterile urine sample. She hates these because I have to clean her little area with betadine, then sterile water, and then wipe clean before I can catch a collect in the cup. The clinician wasn’t sure if we needed on or not, but since Jesse had to go, we figured we’d grab one. I noticed while in the bathroom that her groin had shrunk.

Our ultrasound time came and went (the hurry up you have got to be here now one). Finally at 11:45, they were ready. Jesse’s bladder was full again when we arrived. The tech measured it holding 80mls of urine. Then Jesse went to the bathroom. It was measured again. This time she had 2mls left. The tech was excited because this meant no catheters.

We left her after 15 minutes and returned to clinic. The clinician was extremely nervous because I had Jesse on my shoulders along with my back pack. The nurse practitioner was pretty quick to see us when we returned.

I had told Jesse she was not to interrupt me while I was talking with her because the woman is easily distracted. I asked about her bladder and kidneys. She couldn’t give me an answer because the ultrasound had not been read yet. Then I asked where her tumor was located. She told me that on the CT Scan they still see it in the trunk (original mass) and the spot in her groin area. I asked about surgery. “I wasn’t here yesterday afternoon. And he hasn’t said anything to me.” (Basically I don’t know).

She then started talking about Jesse going inpatient tonight. She told us the chemo would last over 3 days. Even making it sound like we’d be discharged, but we can’t because Jesse has antibody over 4 days. She did say that as long as Jesse didn’t run a fever, she’d be discharged with an ANC of zero.

The practitioner would stop every once in awhile to address Jesse, which was fine. But she did it as baby talk. I hate baby talk. I don’t speak to my child in that tone ever. I should have said something to her then, but let it slid because I needed to make sure she stayed focused on Jesse’s medicine list.

She asked if Jesse had ever had a Tech 9 test before Monday. I don’t remember, but I am sure she has. From the Tech 9, they have determined that Jesse’s kidney function is lower than normal. She will receive a lower dose of carbplatin because her body doesn’t clear it as fast.

She left the room to see if the doctor was out of rounds. If he wasn’t, then Jesse and I would have to return to clinic after her bone marrow biopsy was completed. Here’s the really humorous part of that… schedule says she will finish bone marrow at 4:30. She won’t leave DI Recovery until 5:30pm. Do you really think the doctor will be here at that time? (I was actually wrong… and we actually got there before 5pm)

At 1:30pm, a clinician appeared to take us to Nuke Med for the MIBG scan. I am impressed by how calm Jesse was considering that her bone marrow biopsy time was approaching. In the room, they went over Jesse’s important medical information. I signed the consent with the anesthesiologist, who actually has been the best and friendliest one we have met. She asked if any trouble with sedation before. I told her Jesse has had propofol and precedex. Her ears perked up at precedex. “Precedex? Why did she have that?” I explained that our home hospital chose precedex over propofol. She told me that she’s been trying to get them to use precedex here instead too, but has not had success in being heard.

The sedation nurse got the biggest kick out of Jesse’s name for the IV pole: Fred. She laughed saying she has her own Fred and occasionally he gets on her nerves too. 🙂

They were ready for Jesse in the MIBG room. She happily walked over to the room and hopped up on the table. The sedation nurse had told me that Jesse didn’t have to have sedation for this MIBG. In fact we could have scheduled them as 2 separate procedures. I told her that I had done that in the past, but they had gotten really angry at me.

In the MIBG room, 2 other nurses plus the child life specialist told me the same thing. The child life specialist also mentioned that she would email them about Jesse in the future. I told her that wouldn’t do a lot of good. I then told her about constantly butting heads with people to get what Jesse needed. She was very upset to hear that I am not singing the praises of St Jude. It’s a case of while I am grateful for the support you give my family, I am frustrated by the lack of attention and communication.

She and I talked for quite sometime about how people hid behind doors here. How if I didn’t know what I know from CHKD, then Jesse would be up a creek. We also talked about too many patients per doctor. I even told her my hypothesis why I am treated as a moron, which is my choice of dress and the way I look. She told me that she was looking to find a way to get people in clinic to think to contact to sedation. I told her that sadly you can’t make people think. If they have to think, it will not happen. It needs to be a seamless process. I also told her about the computer trouble I have witnessed. They use Citrix system, but it is set up in such a manner as to be too complicated.

I am now waiting by the DI recovery listening to the door of the Chili’s Care Center beep. I have even heard several comments of this is the non-working-est door. Jesse sedation nurse just tracked me down to let me know she is okay and doing the bone marrow now. It’s employees like her that do make this place great, sadly they get overshadowed by the ones who need a knock in the head. It’s like nephrology nurse here. She saw me in the hall today and asked about Jesse. Then says she will pray for her. Her nurse practitioner on the other hand saw me sitting outside recovery waiting after doing Jesse’s biopsies, but couldn’t walk over to tell me that she had a little more bleeding on the right than left. But otherwise did okay.

Jesse surprised the sedation nurses in recovery at how fast she woke up. She was complaining of pain from the bone marrow biopsies. She wanted the oxycodone that I was carrying. Before she could take it, the nurse had to ask the anesthesiologist. Luckily he agreed. Jesse wanted to leave immediately afterwards, but with her complaining of pain the nurse and anesthesiologist were nervous. I explained that we were going inpatient at 8pm, and she was wanted in clinic before we left.

Jesse was not happy to go back to clinic. We arrived there at 4:50pm. Her clinic nurse was obviously not happy at our late arrival. She told us we could sit but not to ungown because we wouldn’t be staying long. The oncologist came in. He actually looked concerned when he saw Jesse bundled up as she was. I told him she’d just had bone marrow biopsies.

He listened to her, and I actually got a chance to ask about surgery. The surgery conference stated that they did not want to touch her because it would be too dangerous. Now he plans to take her information to the radiation doctor here plus talk with her radiation doctor back home. They are looking to see if they can radiate the area again. But radiation to the original mass in 2011 might make this not possible.

He then talked about the fact her ureters are traveling through the tumor right now. From how he talked, Jesse’s ureters are trapped in the middle of the new tumor growth on the original tumor. I asked if there was any change in her scans from round 2. He said they weren’t sure until the MIBG has been read. He did say that her potassium was 5.4 (normal is 3.5 to 4.5 and too high is over 6). And her phosphorous was high. I am not sure what this means exactly.

I did leave talking with him not having the best of feelings. That feeling of we are just buying time… trying to prevent the inevitable. And I think he feels the same way. He said to us as he left the room that he doesn’t think these 2 rounds of chemo will stop the tumor or cause significant change. And we need to pray hard.

We returned to the Grizzlies House to eat dinner and get everything out of the room. They had us on the list to be out Friday sometime. I figure that will still happen since we’ll be in the hospital for at least 5 days.

At 8pm, we were up on the 2nd floor going through admission. Jesse feels great so this is really hard for her to have to be admitted. And the nurses have been happy to see her. Nurses who aren’t even carrying for her are stopping by to say hello. I learned from the nurse what to expect when Jesse takes etoposide. She could projectile vomit, her oxygen could decrease, or she could cough. Tonight she is still in a great deal of pain from the biopsies. At 10:30pm, we gave her more oxycodone. Still waiting to see the resident for admission to be complete…