Ok so I am basically trying to stay awake for Jesse’s 11pm dose of zofran. I know the doctors and nurses say the nausea is less with irintoecan and temolozide… but for Jesse it is ranking pretty close to cisplatin. Cyclo/topo rounds were not this severe.

Jesse woke me at 6am with diarrhea. She had another round of it about 8am. The irinotecan can cause this.

Jesse was really excited today is Valentine’s day. She woke up this morning talking about it. And she really started talking about it when I asked if she’d like to FaceTime with her class later on. She even went to her class here talking about face timing her friends back home.

Jesse wasn’t interested in breakfast. She was too excited to get to class. She kept asking if we could go over to St Jude and wait. At 9:30am, we headed over. The parking lot was crowded. Instead of fighting the crowds, Jesse and I went to the registration at Chili’s Care Cater.

Then we went to the main building of the hospital and down to the basement for her class. I could hear her tell her teacher about her class at home, her tooth, and Valentine’s day. The teacher had heart shaped candy she was using for a graphing exercise for the kids. Jesse did eat some. (And the teacher asked before hand).

After class, Jesse and I went to check the mail. She had many letters and several packages. The lady commented that Jesse must be very thought of. Jesse was really excited. Because of how busy St Jude’s was, we grabbed a wheelchair for the packages. I am sure that people had some interesting thoughts as we walked along.

Then we went to pharmacy to get Jesse’s IL-2. I asked the pharmacist about 2 vials of GM-CSF I had here that expired 2/18/2014. I wanted to know if I could use those instead of wasting them. But I also wanted to make sure it was safe. The pharmacist was so happy that I had those 2 shots. She talked about how it would save them cost, but she didn’t say how much cost.

I also made sure that they gave me subcutaneous needles for Jesse’s IL-2. Last time I went to give her the shot, I realized the needle was huge. There is someone in pharmacy I think who is either learning or just going through the motions.

She started talking with Jesse about her boots. She mentioned that she wanted a pair of light up ones. Light up shoes always make me think of one of the few times my home county in Virginia made the national news. It was back in the 90s when the light up shoes first came out. We were watching the evening news, and Tom Brokaw announced that in Charles City, Virginia a drug dealer was successfully caught because the police followed his light up shoes.

The mention of drug dealer struck Jesse’s ears. “Justin Beiber?,” she asked. We got to laughing and explained he probably wasn’t even alive when that happened. But Jesse was off and running about how disappointed she is in him for doing drugs, and doing drugs without a prescription could make you really sick. Needless to say she is very disappointed in him.

We returned to RMH right before the rain fell. It always seems to be cloudy and/or rainy in Memphis. Jesse wanted an English toast pizza. She ate 1/3 of it. Then she ate some kisses. She kept asking me if it was time to see her class.

At 1:15pm CT, it was time to face time her class. Jesse was so excited to see everyone and the big red heart. Thank you guys so much. She misses all of you horribly. And tonight when I had to give her her 2 shots in her leg, she told me she wanted to go home and be back at Norge in school.

After talking with her class, Christine, Emileigh, and Landan (thank you for including them), it was time to change Jesse’s tape and claves. I miss my table at home for this. Jesse did a great job holding still. The tape did bother her a little more this time. By 2:30pm, we had it changed and the ethanol in one line to sit for 2 hours.

At 5pm, it was time to do Jesse’s shots. Her anxiety began to climb around 4:45pm. And when I gave her the shots she screamed. I feel like the 5pm alarm. Jesse yelling at me that she’s too precious to get shots. Me having to give the shots.

Afterwards, Jesse had a pretty impressive round of diarrhea and vomiting. She threw up so hard that I will not be surprised if she complains of back pain tomorrow. Once she finished, she felt better asking me for yogurt and nuts, then popcorn. She even ate a bag of Doritos. Hope that stays down to give her some nourishment.

At 9:30pm, she was out. Tomorrow I am going to attempt for us to have a quiet recovery day. I am exhausted.

Thank you Pat and Dallas for the funny face glasses, books, lollipops, and fan. Jesse thought the glasses were great. She loves the pinwheel book. And with her new correct glasses, it’s easier for her to see things.

Thank you Allison, Dale, and Ken for the bald doll, clothes, candy, pen, stickers, and case. Jesse has already changed the dolls outfit several times.

Thank you Mrs. Wheeler’s class for the big red card. Jesse joked that it was her dress. She enjoyed reading the notes.

Thank you Coco, Kathy, and Malakai for the candy, book, shoes, clothes, and hand sanitizer. Jesse loves the shoes. She is talking about wearing them to the kitchen here tomorrow. It will depend on her stomach.

Thank you Ruth for the Minnie doll. Jesse was so excited with her dress. Your family is also in my prayers.

Thank you Erin, Chris, Wyatt, and Brynn for the cards, bracelet, book, Fred decorations, and sticker book. Jesse loved the handmade cards and decorations.

Thank you Brooke for the cabbage patch kid hats. Jesse keeps talking about the ability to put on hair now and take it off. I laughed when I saw them because my cousin and I had been talking about those hats last night.

Thank you Aunt Carolyn & Uncle Jerry for the stickers and activities. Jesse is really excited to try the one with the squares.

Thank you Nancy for the window clings. Jesse hung them on the mirror in our room.

Thank you Lousie Marie for the trips to McDonalds for Jesse.

Thank you Elise & JC for the Precious Moments book and valentine with lollipop. Jesse was so excited to get the Valentine.

Thank you Knob Creek church; Swaims; Uncle Greg & Aunt Beverly (thank you for keeping your head shaved. Jesse is impressed); Mike, Cindy and Biscuit; Susan; Morganton, NC cousins (Tracey, Shelia, Jessica, Emma, Kaydee, and Sis); and Betty for your cards, notes, and well wishes. Jesse was so excited to get your Valentines.

Thank you Dr Coffield for your card that Christine helped with. It was really good to see her handwriting. Thank you for meeting with her.

Yesterday was an improvement over earlier this week. The triage was running on time, and Jesse labs were drawn on time. Her weight has increased to 15.4kg. Jesse was really calm getting her labs drawn. I am starting to think it is that one woman Jesse has associated with being evil or something. When we see her, Jesse’s blood pressure reads high.

Then we went to clinic to wait for the results. I tried to get Jesse into the cafe to maybe pick out something to eat. The minute we walked in, Jesse was covering her nose and complaining of the smell. I took her to the clinic to wait for her appointment.

At the appointment time, they called us back. Jesse’s red blood was a little low – 7.7. This meant a transfusion of red blood in the Medicine Room. The blood would take about 90 minutes to get ready. Her ANC has dropped to 15900 from 16800. The nurse practitioner also agreed to give us fluids and zofran in the eclipse balls through Monday.

I decided to have us wait for the Medicine Room call in the A & B Clinic waiting rooms. The only plug available to charge Jesse’s iPad was located on the wall nearest the kids play area. This actually worked out great because it allowed me to be close to Jesse while she played.

There was a family from India in the area and another little boy. The little boy was sweet, passing Jesse the crayons. Soon he was called back for his appointment. As he was leaving, another little boy about 4 or 5 weighing 90 pounds appeared. First he was banging a drum and looking around to see if anyone was going to react to him.

Then he sat down next to the little girl from India and began asking her why she talked so funny. Then he would mimic her mom and her as they spoke to one another. The Indian mom is obviously a saint. She tried to engage him in conversation asking him what he was playing with. His response to her was: “It’s a pirate ship. What are you, stupid?”

He then moved onto a xylophone near me and began whacking it with all his might. He looked at me (I could see him from the corner of my eye as I was working on my computer.) “Woman don’t you hear what I am doing.” I didn’t even dignify the little cretin with a response. It’s obvious that his home life is horrid. And I would be willing to bet that whatever town he crawled out of has a reservation for him already at their “finest hotel” complete with reservation number.

He then headed for Jesse’s IV bag. And that is when I got him. All I had to say was “Don’t touch that.” And he disappeared. The entire time the whatever she was with him never took her eyes off her phone. She did say one time to behave, but made no move to enforce that.

After he left, we saw some folks we’d gone to the Harlem Globetrotters game with. Really good to run into them, and hopefully they are on their way home today. I did the ANC dance last night because her ANC being low is what is keeping them here. Thank you Helen for Jesse’s picture. She was so excited 🙂

As we were talking the Medicine Room called us back to start the transfusion. After medicating Jesse with Tylenol and Benedryl, the nurses started the infusion. Because Jesse only needed a 1/2 bag, the transfusion was done in 2 hours. Jesse was bored and asking for a craft. The nurses paged child life, but we never heard back from them.

I think this week here is really slammed for some reason. I overheard a lady telling someone they were having to stay at the Crown Plaza because the Grizzly House was full. The parking lot at RMH has been really full too.

While we were waiting, the IV nurse called. She was in disbelief that they’d allowed me to have IV fluid bags for Jesse. “Do you know how to change them? Who taught you?,” she demanded. “Do you know about this?” I told her yes on all accounts. Sheesh, the people here treat me like I am trying to take her out sometimes. I told her that I had changed the one she was currently using given to me by pharmacy. This seem to placate her. She still wasn’t happy that I was being allowed to give her IV fluids.

Jesse and I left after her transfusion. She wanted McDonald’s, and I wanted to see if Jesse’s glasses were ready. We went to the optical store first. The store was open, and the glasses were ready. They look great on her. I’d been imagining she’d have thicker glasses.

Jesse was thrilled. She immediately looked through the top of the frames to see far away, and then the bifocals to see up close. The owner of the store began telling Jesse how she need to look through the glasses, then realized she’d already figured it out. The lady is very nice, but she is interesting. I was afraid we’d be trapped for an hour with her again when I really needed to get Jesse back for her meds. Luckily another child came in after Jesse, and she had to wrap things up with us. Thanks kid!

Back at RMH, Jesse ate her McDonald’s. I did some work, and Jesse did some homework. We are caught up for the moment with school work. Later on we talked to her cousins, dad, sister, and grandma.

At 5pm, I gave her her shot. Always a joy (sarcasm).

Thank you David B. for the squeeze head. We got the best laugh from that. And thank you for the Etch a Sketch. Jesse was mesmerized. She told me she’s only see small ones. 🙂

Thank you for the masks and stickers Uncle Greg and Aunt Beverly. Jesse opened one and is saving the other for Chris.

Thank you Cindy, Mike and Biscuit for the snacks, penguin card, bracelets, and postcards.

Thank you Carolyn, Jean, Uncle Greg and Aunt Beverly, Betty, Knob Creek Church, Aunt Carolyn and Uncle Jerry, Joseph, Pat (and the picture of bears), and Mt Pleasant Baptist Church Tuesday Morning Bible Study for your cards and well wishes.

Because of needing fluids, our nurse practitioner scheduled a lab for 9:30am to check her levels. Jesse and I left RMH early because of the ice that was falling and an employee here saying the roads were bad.

We checked in at registration, who directed us to the Triage in Chili’s Car Center. Since we were early, Jesse and I waited until 9:30. 9:30 came and went, 9:40 came and went, and my OCD over time started to climb. If Jesse didn’t have school at 10am, which is important to her, I might have had a cooler head. But I walked in the door of the triage and asked when Jesse was going to be seen because she had school.

The lady behind the desk told me she was printing Jesse labels for her tubes right then. I got the impression from her that la ti da this is my job attitude she was in no rush. I told her that Jesse has school at 10. “It’s okay honey, you’ll make it.” I don’t think that woman is early for anything.

Needless to say she finished at 5 minutes before Jesse’s class started. And to get Jesse there on time, I had to really ruck it. The classroom is downstairs in a separate building from Chili’s Care Center.

I got Jesse there just as the teacher was calling roll. I hate being late. Hate it.

While Jesse was in class, I checked the mail and went to the cafe to get her something to drink. Her “water source” ran out at 4am. The nurse practitioner had told me it would last till in the late morning. I am learning.

I also was up at 2am and 6am to give Jesse her loperamide. I can’t get a straight answer on the dosage of that either. The bottle says every 3 hours when diarrhea starts… the nurse practitioner tells me that she needs one dose after a soft stool, then another dose 2 hours later. Then wait and see what happens. And this is the answer I get when I ask her how long do I continue the loperamide so that I can make sure we don’t run out.

After Jesse’s school time, we headed to clinic for our 11:15am appointment. 11:30 came and went. I gave them the benefit of the doubt. I’ve seen at least 3 new kids just this week. At 11:45, the nurse practitioner came out looked around, looked directly at us, and disappeared.

As we are waiting, Jesse saw a girl pass us with ladybug wings and face paint. She began begging me to go get her face painted. Had I known that we’d be required to mold for 30 minutes in the clinic waiting room, we’d have gone. I told Jesse we’d have to see how time panned out.

At 11:50, she comes back out and sees us this time. She walks over saying that she’d come out looking for us and didn’t see us. I told her that yes I saw you, and I’ve been sitting in the same spot since 11:08. Then she was complaining about the fact she needed to be in a meeting at 12. Really. I was on time. If you’d seen me on time, then you wouldn’t have to grouse about your other meeting that was obviously way more important than my daughter.

Then she tells me that thinking back it has dawned on her most kids on this round of chemo stay on IV fluids outpatient for a week. (Sorry I had to take a break to go mentally throw things). And now that she has Jesse’s labs, she can order from pharmacy the fluids that Jesse needs. She asked if I’d had the training for hooking up fluids, which I had.

She got someone to print Jesse’s labs. Then she was gone. A research study nurse zipped in asking if Jesse would be on a study for how kids are doing long term. Jesse started begging to go get her face painted. The nurse told us the festival ended at 12 (which it was 12), but to hurry over there because we might be able to get one of the goody bags.

So I ran Jesse and I over to the Pavilion. We made it just in time. Target I think was sponsoring this for the kids to promote their bug and jungle line? It wasn’t very clear to me. We arrived in time for Jesse to get a ladybug painted on her face. Then she got a picture in a car and later with the performers.

She also got to watch 4 guys dressed as frogs perform a circus du soleil style show. The face painting lady told me that was the 4th time they’d preformed this morning. Craziness how they could hold positions sideways, and one guy was doing one handed pullups.

Jesse and I left there to go to our social work appointment. They are working to help us get a refund from an airline since Mike had a change his travel plans in January. I didn’t think we’d be seen early, but the social worker saw us 15 minutes before time. I told her how much I appreciated it. She asked if I wanted to lodge a complaint over the wait times.

I told her no. I need to get over it. There are obviously a ton of people here this week. The parking lot at RMH this morning had more cars in it than I have ever seen. I am sure that all the employees are struggling to keep their heads above water. She told me that triage got so backed up Monday that many of her appointments were no shows or appeared an hour late.

Jesse and I left her, grabbed her IV fluids, and headed for Fisher Optical to get her new glasses. I had called ahead to see if they were there. The phone just rang and rang. The lady we met seemed so out of it, I thought she might be with a customer, and they don’t seem to have an answering machine.

We arrived to find out that they were closed. Luckily we were not charged for parking. But I am frustrated. It’s a case of that was the best, earliest time for me to go. Jesse’s red blood count was 8 today. I think we’ll have to get a transfusion sometime soon, if not tomorrow. And I am really surprised they let us go without a transfusion today.

Jesse’s ANC was 16,800 because of the IL-2 and GM-CSF. I am not sure with this chemo how far it will drop. I do know they want to see it drop and rise before we start round 4.

Since we struck out there, I took Jesse to McDonald’s to get something she might eat. The lady at the McDonald’s on Union Ave was so friendly (yes this is sarcasm). I was just as friendly back ( I did say thank you, but kept it all in a flat tone). And I paid part of the bill in all pennies 🙂 Guess she got the short end of my frustration. Bad Soosan, bad (I’m living on the edge *sarcasm again*)

Jesse and I arrived at RMH around 2pm. It took me 30 minutes to get the old IV fluids off the pump and the new ones on. Then when I started the pump, it told me the fluids weren’t attached. So I took it apart and tried again. This time I had success. Then I called the Medicine Room to double check what I put in for the reservoir level was the right level.

While I got Jesse hooked up and the ethanol in her other line, Jesse ate her chicken nuggets. She took 2 bites and was full. As she took the last bit, her bottom tooth popped out. We had discovered it was loose while waiting for her oncology appointment. She became very concerned about bleeding. I told her that her platelet count was good and that she would clot.

Then she was concerned about what the tooth fairy will bring her. Me too… Her sister got a bathing suit… but I don’t have someone here to run to the store for me while I stay with her.

She put the tooth in a bag and under her pillow. And at 9pm, she wanted to go to sleep. Maybe I need to figure out a way to have her loose the same tooth every night… maybe not, I’d run out of money…

At about 4, I talked with the IV Pharmacy. They were calling about Jesse’s IV zofran. The lady told me that she was going to check for more tomorrow. I told her I would do the same. Jesse has 3 left, and I feel that she needs it still. I also need to make sure she has written the order for Jesse’s IV fluids to last through the weekend.

I also talked with the travel office. Transplant called me today with Mike’s plan. From the looks of things, Jesse will start Round 4 around February 26.

At 6, RMH announced the monthly birthday party. Jesse asked to go for a piece of pizza. She ate half, and then wanted to return to the room. At 7:30pm she told me she wanted popcorn. Unfortunately at 8pm, she could no longer keep everything down. From the amount that she threw up, I am sure it was everything she ate today.

I am hoping the medicine she took tonight will stay down. I plan to give her zofran at 11:20 through her line. I did up the dose by 30 minutes this afternoon because she was complaining about her stomach. Her weight was 15.1kg today. I think we are hanging on by a thread of avoiding TPN.

Day 57 at St Jude

Jesse and I headed over to St Jude about 9:30. Her first stop was school. Jesse was excited to participate in class again. While she did that, I checked the mail and took it out to the car.

Jesse was feeling pretty horrible yesterday. This new chemo has socked more of a punch on her than the cyclo/topo did. And because of this I really wanted to hang onto the IV bag. When I had talked with our main nurse practitioner, she didn’t seem to want Jesse leaving with the fluids. I had tried to get her to give me reason why she didn’t want to continue them. But she didn’t.

After class ended, Jesse was due to have labs drawn. We went upstairs to wait; 30 minutes past our appointment time I got concerned that maybe I forgot to check in. I went to ask the triage secretary. We hadn’t; they were just swamped.

Jesse was called back shortly after that. Her weight was 15.3kg (between throwing up and no interest in food… I’m not surprised.) Her blood pressure was high. I think this nurse had to stick her before the CVL was placed, and Jesse associates her with that. Her labs were a surprise through. She is holding at 8.2 for red blood, ANC is 4400, and platelets are 384.

When we were done, I asked Jesse if she wanted food or drink. She did choose getting a bottle of Brisk tea. Unfortunately the machine had other plans 🙁 I got our money back once, but when it took it the second time, I said forget it.

Because we were 30 minutes late in triage for the labs, Jesse’s appointment in D Clinic was pushed back 30 minutes. While we were waiting there was a young boy (2 years old) all over the waiting room. He kept gravitating to Jesse, but she wanted nothing to do with him. I think she sensed that he was looking to cause trouble. She was right because he whacked another kid in the head with a hammer. He managed to clock her right at the location of her biopsy. She is 2 and recently diagnosed with rhabdyscaroma.

The parents did the horror and sorry and it’s okay dance. I noticed that he disappeared shortly after that. His mom talked to me about his diagnosis: splitzoid melanoma in his leg about a centimeter. Hopefully surgery will take care of his. The little girl he hit has a 5 cm tumor in her face and is looking at chemo first. She already has her CVL in place.

At 1:30pm, Jesse and I were called back to see the doctor and nurse practitioner. I talked with the clinic nurse about keeping the IV fluids. Her comments about it sounded to me like she felt it was a good idea. I also asked her about changing Jesse’s claves every 96 hours because she has fluids running. When she is inpatient, they change the claves every 96 hours. She did tell me that I didn’t have to do that. Jesse interrupted us to say her stomach hurt. I’d given her zofran at 7:30 and Benedryl at 9am because of stomach pain.

I think she went out of the room to get the nurse practitioner to order the zofran because the nurse practitioner came in saying we’d asked for it. No I didn’t. Then she had to leave to cancel the order. Fifteen to thirty minutes later she returned making some whiny comment about “You guys thought I’d disappeared.” I bit my tongue. I detest comments like that. Especially when said in a whiny tone. There is something going on with her. Not sure if she has decided that I am a problem or a personal matter. Either way something has changed since we first met her.

I reiterated again that I wanted Jesse to stay on the fluids. I felt this was really important even though Jesse has told me several times that I have no idea what it is like to lug around that book bag and be attached to something and have no freedom. (And yes this is the part where those of you who have witnessed Jesse’s interaction and attachment with me can laugh). I looked at her each time and told her, she needed the fluids and to get over it.

The nurse practitioner agreed to let us keep the IV fluids. I also requested to get rid of the diluaded and back on oxycodone. The oxycodone seems to be more effective for Jesse. Since Jesse used such a small amount, the nurse practitioner agreed. I joked with Jesse that she was loosing a brick and getting her water source replenished. (This comes from doing a GoRuck challenge back in June. Plus Uncle Jim joking on Facebook when he saw the picture of her ladybug bag.)

Jesse’s main oncologist actually came to see us in clinic. I was highly surprised considering that he is the attending on the floor this week again (they seem to do 2 weeks here). I asked him if Jesse would potentially start Round 4 around February 28. He said it would depend on the meeting of the transplant team on Wednesday. I asked because Mike and I had talked about Jesse and I flying home between round 3 and 4. However with Mike and Chris coming so close to February 28, I don’t see a reason for us to fly home.

I have been talking with Jesse about waiting until after Round 4 to fly home. I think it is crucial that we pound on this tumor as hard as we can and try to catch crucial areas of the cell life cycle possibly. I don’t think Mike is happy with my choice, and I totally understand that. He told me the other night that the house just feels empty without us. I understand, it feels the same way at RMH without him and Chris.

The oncologist was okay with this. Even saying that we might get longer to be home before we have to start round 5. I won’t hold him to that… and we might just say give us 2 full days. I would rather sock this tumor hard and loose 6 months in Virginia to buy more time with Jesse.

After he left, the nurse practitioner returned to say we had an appointment in the medicine room at 3 (it was 2:30pm) for them to teach me how to disconnect the IV fluids and get new fluids. We checked with pharmacy before we left to see if her medicines were ready. Since they weren’t, we opted to come back and get all of them at one time. Boy am I glad I did that since some needed to be refrigerated.

Jesse and I checked in at the Medicine Room. I figured it would be at least a two hour wait. The nurse practitioner told me it would take 2 hours for the bags to fill. We amused ourselves by people watching and joking. There was a cute little boy in the room. I’d cut my eyes at him and he’d smile. Did catch him with a glove in his mouth one time, but talked him into throwing it in the trash. I think he was maybe 18 months?

At almost 6pm, we’d heard nothing. Jesse fell asleep because she felt like crap and was tired from waiting. I went into the Medicine Room to see if I could find out what was going on. At the moment I walked in, the nurse realized the orders had never been put in.

She had talked to the nurse practitioner about the orders, looked at the computer, and misread. She accidentally confused orders from February 3, 2014 as being the ones for today. The nurse practitioner never actually sent the orders over. This nurse in the Medicine Room was going to have to call a resident to get orders. And being a resident for the whole hospital, she’d have to wait for him to call back plus explain the situation to him.

Amazingly he called while we were standing there. He got the orders done quickly. Pharmacy told the nurse it would take 10 minutes to make the IV bag. She was very apologetic about our waiting. I am not upset with her. I am really upset with the nurse practitioner. This is the second time she has done this to us. First it was the getting the basal diluaded rate turned off, and now fluids. If she didn’t agree with me about keeping Jesse on fluids, at least give me a reason so I can weigh your reasoning with my own. Believe me, I won’t follow your decision blindly… I will ask questions.

Finally at 6:15, we were called back to get the new fluids and be trained on how to unhook the fluids. The nurse who trained us was also the one that Jesse took her picture with the other day.

We left them to get Jesse medicines. I had asked for refills of the zofran, bactruim, and mouth wash. The nurse practitioner had ordered her oxycodone. And for the GD2NK study we need the IL-2 and GM-CSF. Plus the ethanol for the Ethel study was ready.

I think the other reason that waiting for 3 and 1/2 hours on IV fluids really made me angry was needing 4 hours on Monday to complete the Ethel study. Since we have fluids running, I have to do one line at a time. The ethanol or placebo has to sit for 2 hours in the line before being drawn out.

I got Jesse back over to RMH a little before 7pm. I got the Ethel study started (it was 11:30pm before I finished it last night). While I was waiting, I washed Jesse’s coat and boots. Right as I got her in the room last night, she threw up. She threw up again when I flushed her line. This irinotecan and temolozide chemo is kicking her butt. They had told me not to expect as much nausea with these as cyclo/topo, but I am having my doubts.

Day 58 at St Jude

Well actually at RMH 🙂 We didn’t even leave RMH today. I took the time to clean the room. I missed cleaning on Saturday ( I like to clean my house every Saturday… it’s a habit… and I don’t feel better until I do). The room was getting to me. I think it would have passed RMH’s inspection, but not mine. I have cleanliness issues.

About 11am, my phone rang with a St Jude number. It was the nurse practitioner calling to apologize. Then she told me that I should have come over to clinic to double check the orders. Let’s see… appointment for the training is at 3pm… you told me it will take 2 hours to make the IV fluids… that makes it 5pm. Gee I wonder where you are headed at 5pm? Maybe to your nice cozy couch… and a kitchen that you don’t have to share with other people.. or to the grocery store because you can just flip in and out with no worries of someone getting sick.

I did tell her I was concerned because this is the second time she has done this to us. Her excuse was that she got distracted trying to figure out which doctor was going to sign us out. I think from now on she’s going to get double questioned from me. I know we all have moments and make mistakes. But the way she has been treating me on top of other things going on makes it hard for me to fully trust her.

We decided to schedule labs for tomorrow in addition to Thursday’s labs. I have a feeling that if Jesse doesn’t start eating more they are going to push the TPN on me. I am not willing to push food though. The nurse practitioner did order Jesse zofran in the eclipses to take. And I have given her peractin today.

Jesse has wanted to eat more today, and we only had one episode of violent ralphing. She has been drinking more on her own too. But she has started the diahrea I was warned about so we have a new medicine that has to be given every 3 hours (every 4 hours at night) : loperamide. Who makes these medicines? Why isn’t there a version that last every 12 hours? And if there is, why can’t we have that one? Yes selfish that I want to sleep through the night… I could be like that poor woman Mom met at the Grizzly house. She had to give her son medicine on the hour every hour. She wasn’t even planning to go to sleep that night.

And the more I have thought about it today, I am going to ask about pill versions of everything Jesse is taking. She can swallow a pill. Why make her suffer the taste of these drugs if she can have the pill version?

Jesse has spent the day laying around, picking at her eyelashes (They are falling out and into her eyes). She has yelled at the RMH phone when it went off every 3 hours to announce the shuttle to Kroger and Walgreens. She did tell me one time when she went to the bathroom that one brick and a water source was easier to carry than 2 bricks and a water source. I got the biggest kick out of that.

The eye glass maker called. Jesse’s glasses are ready for us to pick up tomorrow. I’m actually surprised. The owner is very sweet, but very confused.

We tried to go down for dinner, but the smell in the dining room was making her sick. So we returned to the room quickly.

Jesse did eat on of the push lollipops from Danielle, Sergio, Sullivan, and McKenna. She loves that they are watermelon. Thank you for the Valentines cards.

Thank you Barbara and Alan for the sticker book. Jesse loves it and played with it awhile last night.

Thank you James City 911 Center for all your goodies. The cup has been a big hit and helped get Jesse to drink more today. Thank you.

Day 54

Yes I am off a day or two… just did the start of Day 53 yesterday. But fortunately the rest of yesterday was boring. I always giggle to myself when I think back through my life to how the meaning of that word has changed.

The big excitement yesterday was the arrival of Red Fred the Lady Bug. Having a backpack to carry the pumps and IV fluids makes a huge difference. It is easier for Jesse, and we’ve had less tangles.

We did open a few packages that came yesterday. Thank you Bibby for the crafts, bag, and support. Jesse loves the bag 🙂 Thank you Mom for the book and stickers.

Jesse was exhausted and slept the rest of the day.

This morning we had to be here for labs at 7am. We finished the meropenem last night (crossing my fingers that she doesn’t get a line infection from her own bacteria now that we’ve stopped taking the antibiotic).

And today in Triage, we had success!! Instead of being upset, Jesse got on the scale with no trouble. She weighs 16.5kg ( 36.3 lbs). Her blood pressure was 105/57. Normally in triage she is 117/75.

I forgot my cell phone this morning. Guess I was worrying too much about having all of Jesse’s meds. It’s not a lot, but I feel like I am starting to fry in my head. And that fear of messing up something is causing me to over think things.

After labs, we returned to RMH to grab my phone. And in 15 minutes, we were back at St Jude checking in for the Medicine Room. The nurse asked if we could start 30 minutes earlier. Yeah! Really, really like her because she is totally on the ball.

Jesse took her temolozide at 8:30am. By 9:35am, she started irinotecan. Jesse did a great job taking her meds and drinking the required water this morning. The nurse found her a pink stuffed bear and butterfly balloon because Jesse has been so calm and polite.

The nurse practitioner stopped by to let us know Jesse’s counts. She is down to 2900 on the ANC and 8.3 on the blood. I have a really good feeling that on Sunday, we’ll be hanging out here getting some red blood.

Turns out that Jesse will get Sunday off from having any shots. The last two rounds they started the shots the day after. This round because of the irinotecan half life, Jesse will wait until Monday to start the IL-2 shots.

She also talked about stopping the diluadid basal rate two hours after the end of the antibody. So we might have to hang out here to wait for that time. And we’ll probably see the clinic on Monday. I did talk with them about continuing fluids. She did agree to let them run until they assess Jesse on Monday. They will run at 3/4 of maintenance rate for Jesse.

About 1:30am, Jesse complained that her stomach hurt. We waited to see if the wave of nausea would pass. By 2:45, the antibody was done and we were out the door.

Back at RMH, I gave Jesse her zofran and neuronton. Then I pulled out the one of the bags Melinda and I made for Jesse’s tape changes. In 30 minutes, we had the tape and claves changed. I put the ethanol in Jesse’s white line and waited 2 hours for it to be done. Then I switched her IV fluids to the other clave and put the ethanol in for 2 hours.

We called home to talk with everyone there. Jesse is getting pretty homesick again. But I think she is starting to understand that we need to get all this done. I am wondering now if we will have time to go home between round 3 and 4. The research nurse talked about this chemo hitting at different points in the cell life cycle. I wonder if it would be more advantageous to stay and complete round 4. I do really want to get her home before round 5 and 6 because the nurse said those chemos would significantly drop her counts and require more time for the ANC to return to a low normal level. This also means more GM-CSF shots.

When I talked to Mike, he told me that they had mailed a package. Jesse is so excited for that box to get here. (ME TOO!!! :)) He also told me that the post lady at Norge insisted on paying for the mailing. Thank you Carol.

He also told me about the lady in line with them. Chris has this habit of loudly clearing her throat because of her allergies (I love her, but it drives me insane). The woman looked at Mike and said, “I think she’s sick. You need to take her to the doctor. Her checks are even flushed.” Chris isn’t sick, the temperature was 35 degrees outside, and they had just come in. Mike thanked her for her concern. He’s really good at knowing when she is sick. Believe me there have been many times when I have had to tell him that she didn’t need to go to the doctor.

We joked that it was a good thing I didn’t run into her. I’d have used the line: “Thank you for your concern ma’am, but I have a child fighting cancer for the second time… I’m pretty in tune with when my kids aren’t well due to white blood counts dropping from chemo.” Yes it would have been the major guilt trip and wrong. But hey you want to tell me how to handle my kids and don’t know me from a hole in the ground… it’s open season 🙂 Kind of feel like a Bill Engval joke: “Here’s your sign…”

Jesse did complain about her head hurting. I’m not sure if that is from the antibody, diluadid, or low blood counts. The rest of the evening was luckily uneventful except for Jesse waking me 3 times to go to the bathroom. I’m glad though because it means system works 🙂

Day 55

Snow!! Sometime between when I looked out the window around 2am and 7am when I finally told myself I absolutely had to get up, it snowed! Yes I know there are people thinking, “Eew snow.” But it’s so wonderful to see it.

I medicated Jesse, cleaned off the car, went back to the room to get her, and off we drove to St Jude. The roads are covered with about an half inch of snow. It’s not a long drive from RMH to St Jude, and there was only about 5 other cars on the road.

The nurse in the medicine room wasn’t ready for us. And she was a little confused. It can be confusing. I get confused. I told her what I remembered from the other days, and I kept reiterating that until I could get her to understand me ( I was good. I reiterated it in a calm voice 🙂 ). She wanted to give Jesse the Tylenol 2 hours before the antibody started. I knew it was 1 hour before because Tylenol wears off in 4 hours (or less). She showed me the instructions left for her, and they matched what I remembered.

1. 8:30am Jesse to swallow the 2 Temolozide pills with glass of water
2. Wait one hour
3. Take a vial of blood for the research study
4. Take Benedryl and Tylenol in preparation for antibody HU14
5. Start one hour IV infusion of irinotecan
6. Take blood pressure and temperature
7. Start 4 hour antibody infusion
8. Five minutes after start, get blood pressure and temperature again. Then on the hour
9. One hour after antibody ends, draw blood to check for research study
10. Eight hours after antibody ends, draw another vial of blood for research study
11. Twenty hours after antibody ends, draw another vial of blood

We did switch this up because Jesse complained of an upset stomach. The nurse gave her the Benedryl early. Turns out that the Benedryl is a 24 hour lasting one… glad to find that out now on the day we are finishing. Also glad that I didn’t give her any Benedryl when we at RMH.

As the Benedryl was infusing, Jesse took her Temolozide pills and drank the water. After 30 minutes, she still mentioned her stomach hurt. She asked for Ativan. And it really helped because Jesse asked for muffins shortly after it finished infusing.

She told me she wanted cupcakes. So I ran to get her some and myself coffee. I stopped to speak to the gentleman who normally runs the grill. He comes in early to read and have a cup of coffee before his shift starts.

Because of the medicine Jesse has complained of being dizzy. She says her head still hurts, and her leg is a 3. She did take a few crafts off the happy cart, which she is working on now. They didn’t come with instructions… but she’s happily creating her own 🙂

We had to wait some time for the pharmacy to have the antibody ready. This means that if it goes well infusing, Jesse and I will come back at 11:26pm to get the 8pm blood draw. Not really excited about that, but it needs to happen.

I started the day with hooking Jesse up to the eclipse for her dose of meropenem. Jesse slept, which for mankind is a good thing. If she doesn’t meet the required sleep, she becomes difficult. And getting up early doesn’t really mix with this night owl.

I woke her up about 7:30am to head to St Jude. They have asked us to be at the medicine room by 8am during this treatment. It was almost 9am before they called her back. I took advantage of this by grabbing some coffee and Jesse’s Zantac prescription. I gave Jesse a dose. The Zantac is to help her stomach and GI tract with the itchy feeling the antibody can bring on.

Jesse noticed some heart bag crafts on the table when we walked in. Once she swallowed her telemorizide pills and drank her glass of water, we walked down to make the craft. Turns out it is a bag. And she wants her sister to have it.

After 45 minutes the nurse found us for Jesse to start the irinotecan. She gave Jesse benedryl and tylenol as pre-meds for the antibody, then started the hour infusion. I ran out to grab Jesse some tea and see about getting her meropenem a cold bag. Turns out policy doesn’t allow the medicine room to put medicine in their fridge for your kid.

I noticed that doors were closed going down the hall that are normally open. As I opened the door for D Clinic I saw the fire alarm lights were blinking and the metal door for the D Clinic desk was down. The same metal doors shuttered the pharmacy windows too.

Since I couldn’t get the cold bag, I went to get Jesse’s tea. The pharmacy workers were standing in the hall. I went in the cafeteria to get water, and all the cafe workers were out of the kitchen. The checkout lady was complaining that the problem was over and people needed to get back to work. I asked her what happened, and she said someone smoked something up in the kitchen.

I returned to Jesse. A photographer was waiting for me to come back. He wanted to take pictures of Jesse with a nurse for the cover of the Promise magazine. The nurse is being featured in the April issue of the magazine that is in circulation for 180,000 people. The photographer took a bunch of pictures, and Jesse did reach the “I’m over this point.”

After they left Jesse wanted to go back to the play area. I was feeling slightly frazzled because I needed to get some work done. Finally it dawned on me to take my computer to the play area (duh). Jesse played for a bit before wanting to return to the room.

It was time for the antibody to start. The first 2 hours passed quietly, but after that Jesse began complaining of pain. We talked with the nurse practitioner and her suggestion was for me to push Jesse pain button. I wasn’t comfortable with that because Jesse was complaining the medicine made her feel dizzy.

I don’t think the nurse was comfortable with that either. She was able to get the nurse practitioner to raise Jesse’s rate to 0.2ml of diluadid. This did cause Jesse to go to sleep. And Jesse slept through the last 2 hours of the antibody.

While she was sleeping the research nurse stopped by. And she was the one I needed to see. I asked her about why we weren’t staying with the cyclo/topo if if was working. She explained that normal cells have a life cycle of 30 days. Cyclo/topo hits cancer cells at one stage, and the irinotecan and telemorizide hits at another point in the life cycle of the cell. This made me wonder what a life cycle of a neuroblastoma cell is. She said that is the question the researchers are working to answer.

I asked her what the percentage of shrinkage in Jesse’s tumor was and what were they measuring. The main oncologist has told me the original tumor is included in the measurement. She didn’t know, but told me she would return to her office to find out.

I asked her how much Jesse’s counts will drop while we are doing this round. She told me that she should not get below 500 and this means less GM-CSF shots. Yeah!! But she warned me that during rounds 5 and 6 with the ICE chemo (some chemo with an i name that is not irinotecan, carbplatin, and etopside) she will fall in counts and stay down longer… potentially to day 30 of each round.

I asked her about the bone marrow biopsy and pain Jesse had this time. She told me with each bone marrow biopsy the scar tissue makes getting the next one more “adventurous”. She also told me the GM-CSF shots cause the bones to harden.

She also told me that the humanized antibody with this chemo has been very effective for patients. I know that she was trying to help give me a glimmer of hope. I greatly appreciate it, but I am also very aware that each child is different. And their outcome will be different. We just have to keep praying.

After she left, the nurse practitioner came back to see how Jesse was doing. She felt that since Jesse was sleeping the increased basal rate was effective. The first day of antibody is always very painful. We discussed reducing her rate when the antibody was done for the day and trying that rate for Day 3 (that’s today… Day 53). We’ll see how it goes.

Unfortunately the nurse practitioner forgot to communicate this to the nurse. But the nurse is really good. She asked me and called her to see what was the plan. I could tell the nurse was a little frustrated the nurse practitioner didn’t find her to let her know what was the plan. And I don’t blame her at all for the frustration.

The research nurse called me back to tell me that the tumor had shrunk by 32%. They are measuring the 2 in her lymph nodes, in the pelvis, and what appeared in the bone marrow. The bone marrow has come back clear. She also gave me the HVA and VMA numbers. These are catecholamines they measure in the urine. They were not able to get a VMA number because she didn’t give them enough urine last time. The HVA and VMA allow the doctors to know if her tumor is starting to grow (this is how the research nurse explained it to me).

I greatly appreciate her taking the time to give me that information. And from now on, I am going to hunt her down when I have questions. She deals mainly with the GD2NK study.

Jesse and I hung around till 4:15 because they needed a lab an hour after the antibody finished. They also needed a lab 8 hours after the antibody stopped. We opted to go back to RMH to wait for 11:11pm.

At RMH, a group who is raising money for the house (I won’t say there name because the 2 times I have interacted with them, I have been a little disgusted) was hosting a coffee mug painting. I had a sneaking suspicion this might be a sweatshop set up. Kids with cancer paint the mugs, they take the mugs and auction them off to raise money. I was hoping that maybe they would let Jesse paint one for herself and one to auction.

I was wrong. And Jesse was extremely disappointed. From now on when I see their name, we will not be participating. I feel with this group it is all about making themselves look good and not about truly helping the kids feel better. They stood in the kitchen announcing the last time they were at RMH, they’d raised $58,000 for RMH this year. Yet they did the cheapest possible dinner they could with the least amount of work. Other groups that have come in have come with true love and caring in their hearts. This group had only one person who interacted with the kids. The others just gave the vibe of “I am here and you should bask in my presence.” And to have a meeting in the kitchen touting how much you’ve made was slightly tacky.

And for the cup painting, I overheard someone ask what the group wanted done. I am not sure if they did have a representative of the group there. But I have a serious suspicion they didn’t.

We returned to our room. Jesse called home. While we called, her stomach got the better of her… and she got the bedspread. Afterwards Jesse told me she was hungry and wanted chick peas. I took the dirty bedspread down to the window and stopped back by the kitchen to get her peas.

Jesse ate them well, but in an hour… they made the return trip. I was better prepared this time. Poor Jesse kept apologizing for throwing up. I told her it was fine that hopefully this means the new chemo is working hard. I wonder if hearing that guy cuss his wife on Monday in the restaurant has stuck with her. Jesse is pretty intuitive and doesn’t miss much. And I did not raise my voice in anyway while she was ralphing. I did run to grab some bags.

At 10:50, we head back to the medicine room for Jesse’s 8 hour labs. Since she took a nap earlier and they only need this lab on Day 1 and Day 4 of antibody, I didn’t mind taking her over. And it was easy peasy. Got the lab, hooked on the meropenem, and back at RMH in less than 20 minutes.

Jesse was out. I had to wait on Jesse meropenem to finish and laundry. While I was waiting, I checked the schedule. Tomorrow we have to be over here at 7am for labs.

Day 53 start

I got Jesse up at 7:25am to come over. She told me that she was hungry, but once she smelled the cafe… the hunger went away. The medicine room nurse called us back at 8:10. We can’t start till 9, but at least she’ll let us wait back here. I thanked her. She is totally on the ball. I so appreciate that.

Jesse started complaining her stomach hurt about 8:55. Instead of giving her the telemoirzide chemo pills (2 pills), the nurse gave her a dose of ativan. After the ativan completed, Jesse swallowed the pills. The big concern was her being able to drink the cup of water required with the pills. Jesse did it! And knock on wood we are an hour out, and everything is still down.

We are getting ready to start the irinotecan. Jesse is complaining of being dizzy due to the ativan. And she has complained of pain at the bone marrow biopsy site. Since she has diluadid on a pump, I had her push the button.

She is really excited to get the mail today because I ordered her a backpack for Fred (aka the pumps and IV bag). The backpack will hopefully be easier for Jesse to carry. I’m glad I let her decide. They had a ladybug and a monkey. I thought she’d choose the monkey, but she went with the lady bug 🙂

At 8am Jesse and I arrived at St Jude to wait on the medicine room to be ready for her. A little after 8:30, we were called back to get started.

The nurse came in with zofran and the telemorozide. This is the first time Jesse has taken a pill chemo. I stopped her from giving Jesse any zofran because I gave it to her at 7am this morning.

Jesse then took the two pills with water. For some reason asking her to drink the entire cup of water was like asking her to move a mountain. She did drink the water. I am concerned how this is going to get by Saturday.

The nurse practitioner stopped by to see how things are going and to ask about antibody for tomorrow. I asked her for diluadid and zantac. Jesse did so much better with diluadid last time. Instead of knowing that Jesse did that last time, she got stuck on wanting to give her morphine. I told her to talk with the attending from last antibody because she switched Jesse to diluadid.

We talked back and forth about it for a few minutes before it dawned on her that she was reading Jesse’s first antibody and not looking at her second one. Then she looked at Jesse commenting that I was keeping her and Jesse straight. I am so tired of having to deal with people treating me like I have shown up and checked out.

The nurse who did the chemo today was interesting. I am not sure what her deal was, but I am glad I am pre-medicating Jesse. She made some comment about her kids at one time that just was odd. Then she complained about on her day off not being able to be home because she had to go to the doctor. Complained about this to Jesse. Jesse hasn’t been home in 51 days. And if she has no guarantee once she gets home as to how long she’ll get to be there. We might get 2 years again… might get more…we are definitely praying for more.

I am guessing this woman had some serious illness at one point. She talked about a IV bag because we were leaving with IV fluids (Backpack Fred). And from the sounds of things, they might let me leave with Jesse on diluaded and IV fluid tomorrow. When the nurse practitioner called there was some comment she made about evaluating to see if we needed to be inpatient. I guess she is concerned about me being alone with Jesse.

I would rather try to keep Jesse at RMH if we can. First reason: she eats here. She doesn’t seem to care for anything in the cafeteria at St Jude. Second reason: We don’t have everyone seeing her all at the same time. Third reason: I don’t have to leave her by herself at all. I can take a shower with her sitting 25 feet from me. There, I have to leave her. And the last two times the nurse’s station has been down the hall from us.

Jesse mentioned food when we left the medicine room at 11am, but once we got it, she wasn’t interested. The good news is after complaining her stomach hurting at 3pm and getting zofran, she has eaten chick peas, yogurt, and pretzels. She has also used the bathroom several times and drank 2 cans of tea and 20oz of water.

At 12:30pm, the eye clinic saw her. This was a different optometrist. And her assessment of Jesse’s vision was worse than before. I asked her if the antibody could cause Jesse’s eyesight to worsen, but she didn’t know. She asked her colleague who had measured Jesse’s eyes before. He said it shouldn’t. They did say if her glasses didn’t seem to help, they could make adjustments to the prescription.

Fortunately at this point we were done at St Jude for the day. We headed out into the deluge of rain and back to RMH.

Tomorrow will be a long day of hanging out in the medicine room. I figure they won’t start her first chemo til 9 (though we’re there at 8). The second chemo will be at 10. The antibody will start at 11. If we are lucky, that will only take 4 hours. I am sure they will want to observe her for some time after the antibody stops.

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.

Jesse and I went to D clinic to wait for her appointment with the nurse practitioner who would be doing the bone marrow biopsy. She came in and I brought up the lump I noticed where Jesse’s left nephrostomy tube had been. I noticed it last night when Jesse complained of pain last night in her back.

She left to get the doctor. Poor doctor was the guy I told I was frustrated on the day that Jesse threw up. He is definitely a patience soul because he was super nice. They looked at her back and decided to contact the radiology nurse.

Jesse and I left them to head for her MIBG sedation appointment. On the way we ran into the radiology nurse. I told her what was happening. And she decided to call the nephrologist and talk with him and D clinic.

We didn’t have to wait long for sedation to be ready to see Jesse. The nurse was the same one who Jesse has seen. And because she was comfortable with her, Jesse talked a blue streak. It was so nice to see her comfortable with this.

At 10, Jesse was taken to the MIBG machine. She tried to climb on the table, but wasn’t tall enough without help. The nurse lifted her on the table and got Jesse settled. They commented on her heart rate being high.

They went ahead and used the propofol to put Jesse to sleep, and I left the room to wait for her to wake up. As Jesse was going to sleep, she asked me again if Melinda would be here when she woke up. I told her that we were crossing our fingers.

Melinda had planned to arrive last night, but with her flight going through Atlanta and mechanical trouble… let’s just say after several hours of delays the flight was canceled. To get another flight here, Melinda had to point out to the ticket person that it was mechanical trouble and therefore they needed to get her another flight.

The second flight left this morning and arrived in Memphis around 11. Mike had given her the name and number of the driver he uses when traveling to St Jude. The driver dropped her off at a little before 12.

Shortly after that, the nurse called to say Jesse was stirring. She was really cool in letting Melinda come back with me. I think that had other patients been in there, she wouldn’t have let us.

Jesse sat right up when she heard Melinda’s voice, and by 12:30, we were back at RMH. I gave Jesse some oxycodone, and we went downstairs to make crispy Parmesan edmame. Yum 🙂

Jesse had two helpings of the edmame and peas. Then we came upstairs to give her the meropenem and change her dressing. Jesse was still talking about eating, but I made her wait for 30 minutes to let the zofran get into her system.

She did an awesome job of holding still when we changed her tape and clave. But unfortunately by 5:30pm, she was complaining that her back was burning. The nurse practitioner had called me to say they felt Jesse had a subcutaneous infection on that left back side. They feel the meropenem will cover the infection, but Infectious Disease will see her in clinic on Monday.

We debated taking Jesse to the medicine room, but decided to hold off to see if the next dose of oxycodone would help. We were able to get her to pinpoint where the burning feeling was. It turns out the pain was more in her biopsy sites. Since the bandages had fallen off, I opted to put some camoseptin and new bandages on the sites.

Melinda had the brilliant idea to make up some dressing and clave change kits. It really frustrates me that as a parent with previous training on doing sterile dressing changes, I can’t have the pre-made kits the nurses get. I was able to get them to give me the parts, but I have to configure the layout to keep everything as sterile as possible.

After giving Jesse her next dose of oxycodone, she dosed off. I am not sure how this biopsy was done, but I don’t remember Jesse hurting this much before. She did mention a little while ago that she was taking the best nap ever. And I do hope this sleep makes her feel better.

We are waiting to do the meropenem and other medicines at 10pm.