I really didn’t want to get up this morning. But Jesse needed to be at the Medicine Room by 9am to start chemo. This is the last day of treatment for Round 4. Jesse really didn’t want to be up either.

We arrived at 9am and the clinician promptly fetched us from the isolation doors. I figured we’d have to wait an unknown amount of time. She took Jesse’s vitals in the isolation room inside the Medical Room. Then she was gone.

Jesse and I waited, and waited, and waited. Finally about 10:30, I went out to ask if there was any rumor of who our nurse would be. I was a tad bit frustrated at this point. Jesse and I could have slept longer if I’d known we’d not be starting till almost 11am.

The nurse told me who was our nurse, and I returned to our room to continue waiting. He promptly came in afterwards. He apologized about the wait. He was trying to make sure he had everything on the protocol just right. I told him that was fine, I just wanted someone to come in and tell me what was going on.

Because of the phone calls to understand how the research team wanted labs drawn, computer glitches, other patients, and canceled labs; Jesse didn’t start chemo until 11:21. She will need a lab draw 1 hour after the antibody stops.

The nurse was really apologetic, and I am not angry with him. I just want to know what is going on. I am a little frustrated that we’d requested a 2 hour move up on chemo and antibody to have that not happen. But I understand that everyone needs to fully understand what is going on. And if we are figuring right on the traffic through here, they see many different protocols all with different needs.

After the temolozide, Jesse received the irinotecan. She then told me she’d had an accident. I cleaned her up. About 30 minutes later she had another one. I tried to give her the loperamide drug to prevent diarrhea, but in 5 minutes she threw it up.

She tried to eat peanuts, but those came up. The nurse came in with zofran and Benedryl for Jesse. This combined with the diluaded knocked her out. At 2:30, we were able to give her Tylenol and Ativan. Those have stayed down. At 3pm, we started the antibody. I gave her the loperamide again along with her neuronton.

At 6:50pm, Jesse’s antibody finished infusing. We had to wait an hour for the protocol labs. And then another hour before we could discontinue the basal rate of the diluadid. I wish they would cut her diluadid completely. Oxycodone is more effective for her pain afterwards.

It was 9pm, before we left. I gave her a eclipse of zofran. Around midnight, we zonked. I woke at 5am to give her her next zofran dose. Jesse had an accident in the bed because of all the fluids. I stripped the bed.

When the cleaning lady came, I asked her for sheets and everything to make the bed. She acted surprised that I was willing to make the bed. I told her I don’t mind. The weather is going to take a nose dive here today. I’d rather help her finish faster so she can get home before it gets too bad.

In fact with the weather report as it is, I called Mike to tell him that he should head to the airport to get on stand by. He was really lucky at the first airport. They put him on a plane to Charlotte no trouble. But in Charlotte, he has to wait until 5:10 ET to ask if he can get on the plane to Memphis. This is earliest flight he can get from Charlotte to Memphis. The next one is 8pm, and is the flight he is originally booked for.

Jesse herself has been up and down all day. Not sure how much the Ativan is playing with the mood swings, but she is eating a little. Fortunately what she is eating is staying down. We have to walk over to St Jude at 3pm for labs. Tomorrow her day will start at 10:30 and looks like we have appointments until almost 3pm. Mike will be undergoing the aphresis for his natural killer cells starting at 8:30am.

Currently in Memphis the weather is starting to change to icy rain. Mike is number 1 on standby in Charlotte… crossing my fingers. And because of the whether it is crazy at St Jude. Jesse and I ran over at 3pm for her labs. They are so backed up from people arriving now to beat the weather, they can’t even see straight. It was 35 minutes before they could come draw Jesse’s 1 teaspoon of blood for the protocol.

Thank you for the cards and well wishes Ann, Betty, Mom (and bracelet), Greg and Beverly (stickers and way to get herself a treat), Mariam and Sarah, Casar Baptist Church Prayer Group, Mt Pleasant Baptist Church Tuesday Morning Bible Study, Nancy, Carolyn, Candy (and stickers), Aunt Carolyn, Ruth, Faye, Uncle Jerry, Jenny, Roger, Jonnie, Ken, Jessie, Ricky, Howard, Ethel, and Margaret.

At 3:30am, my alarm went off to give Jesse her meropenem. Luckily tonight is the last dose of that. At 4, I took the meropenem off and hooked up the zofran eclipse. I set my alarm to make sure I was awake at 4:30 to remove it. I woke up at 5:40 because I slept through the alarm. I did a quick flush and draw back on her line to make sure it was still working. Whew, it was.

I decided I’d better stay up so I didn’t miss Jesse’s 7am appointment. About 6:30, I woke Jesse and dressed her. She was begging me to go back to sleep. I told her she could sleep in D Clinic because we’d have about a 4 hour wait there.

We walked over to the isolation doors. Another family was already waiting. The mom mentioned she’d called her clinic as they ask you to on the wall, but there was no answer. As I was dialing, I asked her which clinic they called. She told me D. Between our arrival and theirs, someone had arrived at D clinc. After registering Jesse, I gave the phone to the other mom.

As we hung up the phone, the isolation nurse arrived. After Jesse and the other kid were dressed in protective gowns, she led us both to D Clinic. Jesse and I scooted the chairs together to make a bed, then she and I dosed off. At some time, her clinic nurse came in. As she drew labs, I asked if they were checking platelets. Turns out they weren’t. But she looked at Jesse and felt that maybe we should.

She left to send the labs, and Jesse and I dosed off again. I woke up around 8am when the clinician came in to do labs. She was angry about one of the nurses calling her boss because she wasn’t directly in the clinic at the time she was supposed to be because she was listening to a lady crying. I just nodded my head and listened. I’m just trying to get Jesse through her treatments and out of here.

At sometime they came in to tell me her platelets are fine, but her red blood had tanked. She was 8.4 yesterday, but today she is 7.6. They were not sure when they would do the transfusion, but we’d get one before we left. A nurse practitioner (not our regular or the one I really like) saw us. I asked her to write an order to discontinue the basal rate tomorrow after the antibody ended. Jesse has complained more this time about being dizzy than I remember. Some of the dizziness might come from the ativan too. The nurse practitioner doesn’t seemed interested in writing that order. I get so sick of these people who see us one time, but don’t think I have a clue.

Having the ativan and apreptitant along with the zofran has made a huge difference. Jesse ate yesterday and today. And knock on wood, the food has stayed down. And if I can get them to let me keep the nausea meds, maybe we can take her off the IV fluids sooner? We’ll see. I mainly want to see if the apreptitant is what is the magic ticket.

About 10:30, I heard the clinician ask loudly why we were still in D clinic. She then came to take us to the med room to start the chemo and antibody. When we arrived at the med room, I hooked up Jesse’s meropenem dose. The next dose is due at 7pm… not sure if that will happen then. We started chemo at 11 with the temolozide.

While we waited for the hour before irinotecan could start, I changed Jesse’s tape. I am really grateful the nurse today suggested doing that. We have been extremely fortunate this round with nurses (except for one nurse we saw briefly tonight… more in a bit). The nurse on Tuesday – she was okay. She’s the one that judged me when she first met me. The nurse for Wednesday – cancer survivor at 34, totally gets it, fantastic, and on the ball. The main nurse for Thursday and Friday – at first I think she was a little scared when she saw me. She was the poor soul who got caught in the middle of the IV fluids not being ordered and us having to wait 3 hours. But she has been fantastic too. Very compassionate.

Jesse also has another nurse in the med room she really likes. He has all these bracelets he wears. When she first arrived and was really scared, he used those bracelets to distract her. And she just fell in love with him. She asked her dad to bring her some bracelets from home to give to the bracelet nurse (who only wears purple uniforms and has a shaved head). She got to give them to him yesterday. Oh how that made her day. It made his too 🙂

At 12pm, the nurse started the irinotecan to run for its hour. Then it was time to do Benedryl and Tylenol in preparation for the antibody. Jesse asked to go to the bathroom, and for some reason it hurt. Our nurse called clinic for their opinion, and they asked us to collect a sterile urine. Jesse mentioned she needed to go again. The nurse got the sterile kit ready while I got Jesse ready. And we got the sample. And that time Jesse said it didn’t burn. Yeah 🙂

At 12:30, I gave Jesse more ativan. At 1pm, I gave her apreptitant. She then devoured goldfish, jello, teddy grahams, and ate some ice cream. She even ate a few bites of a honey bun.

At 3:30pm, I went to check the mail. Thank you Aunt Carolyn and Uncle Jerry for the paint by numbers, york patties, sticker diva book, biscuit goes to library, and UV light dancing flower. Jesse has enjoyed the paint by number.

Thank you Brenda and Larry for crayons, activities, puzzle, coloring books, stickers, gummies, Starbucks card, and addition cards. Jesse is really interested in putting the puzzle together, but got tired before she had a chance. Thank you Mark and Jill for the stamps. Jesse loved looking at the princesses.

I had been hoping a package for me that I’d order had arrived today. From what I could see, it had, but patient services directed me to call the Mail Room. I called them, they didn’t have it. So I waited about 30 minutes to go back to patient services to see if maybe it was in route. They didn’t have it and called mail room to see if they would send it. Turned out my option was to take the shuttle to mail room, wherever that is. I can’t because of Jesse being in isolation. So I get to wait till Monday. The package arrived here by at least noon. I think they also made some comment about it being Friday at 4:30pm. So happy that their lives don’t have to be spent sitting in a hospital, and they get to go home on a Friday (Yes internally I am thinking “up yours buddy.”)

When I returned to Jesse, it was time for her vitals to be taken. The main nurse for the day was starting chemo for another patient. She asked the nurse we’d had for Round 3 Day 1 to come in to check them.

She walks in the door says to me: “I can’t wait to go home. I have been here since 7am. And I keep waking up at 4am on the dot.” I told her well that’s great you have time to read or get a workout in. “No I had to do laundry for the youngest because he didn’t have his uniform pants in the wash last night. Then I did another load of laundry, loaded the dishwasher, feed the cat and dog, took out the recycling, and packed lunches. And for the recycling I had to break down the boxes because I asked them to do it.” (Read this is your whiniest voice)

I wanted to say to her that I hadn’t been home in 75 days. I also wanted to tell her to quit griping… her kids are healthy. So what you have to do that stuff now it’s done before you get home tonight.

Then she tells me to have a good weekend. I echoed the sentiment… but I didn’t really mean it. I can’t stand the ones that walk in here complaining about being here or sighing that they are going home. You can go get another job.

Jesse has no choice. It’s either be here to try to live or die. And for me, it’s no choice but to be here because she needs me to be here. Heck Mike flies here to see her, and I have driven through snow to get her here. I’d love to be at home where my internet works… and I don’t spend half the day fighting with it to stay up so I can work. Packages come to my front door. I don’t have to go tracking them down.

At home I can make truly gluten free meals with veggies and meat like I want. I don’t have to wait for someone else to cook it for me or worry about cross contamination. And at home I don’t have to share a kitchen with a bunch of people I can’t tell to clean up after themselves. Yes my feet and hands are starting to itch. Maybe I can get them to keep us in isolation because I have this funky stuff on my hand.

Yeah sure I could complain about her, but she’s the type who will say I was looking for someone to take my issues out on.

At 6:15, the antibody finished. Around 6:30pm, they hung the red blood to be transfused. Since Jesse was getting a half bag, it only took 2 hours. When the blood was done, we changed Jesse claves. It was 9pm when we walked through the door. I gave Jesse her zofran eclipse, which takes 30 minutes. Then it was time for the meropenem. This takes 30 minutes to transfuse too. When those completed, I put Jesse’s ethanol/ placebo in the white line. This needed to site for 2 hours. It was a little before 12:30 before I could remove it, switch her IV fluids to the red line, and wait 2 hours for the ethanol/ placebo to sit.

I did set my alarm to catch a few minutes of sleep. But Jesse decided that she was really thirsty from 1:30am to 2:30am. Then she had to pee. All of this is good because it means she is flushing the treatment out of her system. Just not great timing for me.

At 5:45am, Jesse needed her meropenem. At 6;15am, I gave her her zofran. I set my alarm for 30 minutes. When I removed her zofran, I reset my alarm for 7:52. We were asked to come to the Medicine Room at 9am because they had an order to move her chemo up 2 hours from yesterday. We hit some bumps in the road there. I’ll cover that in today’s post.

It has come to my attention that I had a misprint on the site about the Chili’s in Williamsburg. If I every state that something is better in Memphis, that is a misprint. The Chili’s in Williamsburg is way better.

Yesterday Jesse and I had to be here by 9am. Luckily they took is right back to the Medicine Room isolation. I know Jesse hates isolation, but I am loving it. No tracking all over the hospital. I can sit in one place and actually try to work when the internet wants to cooperate.

The teacher came by. Jesse was really excited to work with her on her school work. She even asked to do her homework right then. I am happy that she got it all done.

After she left, the social worker stopped by for a visit. The nurse practitioner that I really like stopped in too. She ordered some Benedryl and zofran eclipses and IV fluids. I have been voicing my concern that Jesse was going to get really nauseous. She also went to work on getting zantac and loperamide in the pill form. Yeah!

At 10:30, we started the temolozide. Jesse complained about having to drink the whole glass of water. She did do it. Afterwards she asked me for a bag of animal crackers. The irinotecan started an hour afterwards to run for an hour.

She then got Benedryl and Tylenol in preparation for the antibody. The dose of Benedryl is a 24 hour dose. The antibody started around 1:15pm, but we had to stop and give Jesse more Benedryl because she started itching. I’m not sure if it was from the antibody or the diluadid. She is on .1ml basal rate (continous). The nurse gave her a bolus at 45 minutes before, 30 minutes before, and right before the antibody started.

After the itching stopped, the rest of antibody passed quietly. Jesse did not seem to suffer any pain, and actually didn’t push her button last night. The antibody finished around 5:15pm. The researchers need a lab drawn an hour after antibody stops. While we waited, I gave Jesse her meropenem eclipse.

At almost 6pm, she violently threw up. She then wanted a cheese sandwich, but 30 minutes later that was up. Before falling asleep at 12am, Jesse threw up 4 more times. Anytime I tried to give her medicine by mouth, she was throwing up.

While I was waiting for her zofran, I put the ethanol/placebo in her red line. I gave her a zofran eclipse at 9pm and her meropenem at 1am. After her zofran, I put the ethanol/ placebo in the white line to wait the 2 hours. At 5am, it was time for more zofran. Jesse also need to use the bathroom. She needed medicine for diarrhea, and luckily that stayed down. At 5:30am, I gave her zantac in preparation for the antibody. And luckily that stayed down.

She slept until I woke her up at 9:35am to get ready to come over to the main hospital. I gave her two medicines, but unfortunately 30 minutes later she threw it up.

Luckily we were headed to the clinic. And we had the nurse practitioner who is on the ball. She suggested ativan for Jesse along with a 24 hour nausea medicine called apreptitant. She also was successful in getting all of Jesse’s medicines in the pill form that she could.

We met with her after they took Jesse’s labs and weight. Her weight surprisingly enough was 15.6kilograms. I am really surprised. As much as she threw up yesterday, I was preparing for a round with the nutritionist.

We had to wait for her blood work to come back before they would take us to the medicine room to start chemo. This is a little frustrating to me. Currently it’ll be after 7pm before we can leave. And this also means that I will have to give her a dose of meropenem at 3am.

And we had to wait for her doctor to come see us before we could head to the medicine room to get started. He mentioned something about coming home next week, but he wasn’t making sense to me. Jesse stayed on fluids for almost 2 weeks after the chemo and antibody of Round 3. And she needed blood on Day 7 after the chemo and antibody were done. He also talked about letting us go home for longer than 2 or 3 days. I am concerned that longer than 2 or 3 days… and I won’t get Jesse to come back. Heck, I won’t want to come back. If the internet and rooms here were more parent friendly, it might be easier…

At 12pm, we gave her another dose of zofran. At 12:30, we gave her ativan. After having the ativan, Jesse was able to take the 24 hour nausea drug, apreptitant. She then asked for animal crakers. After taking her temolozide at 12:52pm, I went to find her some animal crackers. She ate those and asked for chips. I made her wait until the irinotecan started before I went for chips. She has luckily not complained of pain yet, but she has complained about being dizzy.

As I was leaving a new volunteer was heading in. She was obviously uncomfortable, and this in turn makes me uncomfortable. Jesse enjoyed working on mosaic art with her. I guess sometimes I feel like I have to entertain these people when I really don’t want to. And yes Jesse enjoys the distraction… but there have only been 1 or 2 volunteers I have met that didn’t make me uncomfortable.

At almost 3pm, the nurse gave Jesse Benedryl to start the antibody. This plus the boluses of dilaudid have knocked her out. We have about 2 hours left on the antibody.

We started the day early as Mike and Chris had to leave and fly back home. Jesse stayed awake for a bit after they left. I was able to get her to fall back asleep until 7:20 when we walked over. We were the first to reach the isolation doors. A few minutes later another family joined us, then another.

When you arrive at the isolation doors, one set opens to a holding area. On the wall is a phone where you call your clinic. I called when we arrived. The next family was headed to D Clinic too, so they called. The lady on the other end mistook that mother for me because I heard her explain that she wasn’t me.

The third guy that came in didn’t call because he asked where we were going and was headed to the same place. I joked that I wouldn’t have called twice because the clinician is obviously a lady not to be trifled with.

The isolation room nurse/ registrar appeared before D Clinic clinician did. She was very confused to see us because we weren’t on her list. After a few phone calls she figured out that we were headed to surgery.

We headed upstairs to the operating pre-op room. We had a different nurse than the first time. Thank goodness. The one we had the first time was still there. She’s not very personable. The nurse asked Jesse to change. After 15 minutes Jesse needed to pee. I asked the nurse about going to the bathroom since Jesse was attached to fluids on a pole attached to the bed.

The nurse we met the first time asked me to wait because she was helping another child get ready. Ten minutes later, Jesse couldn’t hold it any longer. I stepped out again to see about her going to the bathroom. The nurse then realized she’d forgotten.

At 8:30am, the urologist arrived. As he went to change they gave Jesse verset to relax her. She really didn’t need it. And I might ask in the future to let her have the choice of wanting it. I had suited up so I could walk with her back to the operating room. The operating room nurses are very friendly. Complete opposite of the pre-op check in nurse. One had Jesse cracking up because she was telling her not to laugh.

The anesthesia nurse gave Jesse propofol, and she was out. They didn’t realize it right away until I told them she always sleeps with her eyes half cracked. I left the room, and in 20 minutes the urologist came out to speak to me.

We stepped into the hall because 3 other families were waiting in the small waiting room. The stents came out really easy. And the test and x-rays of her ureters look good. He did say she’d having some burning urine for a few times.

Jesse was awake by 9:45am. She was really upset that she’d missed the entire procedure. She wanted to see the stents coming out. We tried to explain that she really didn’t. The nurse was super nice, going to find her a package with the stents so she could see what they looked like.

We were scheduled to go to school, but when the nurse called the teacher said she’d come see Jesse in the Medicine Room. Never laid eyes on them. At 11am, Jesse was begging for food. I walked out to see who are nurse was. They hadn’t assigned anyone yet, but said it was ok for me to go get her food.

As Jesse was eating her lunch, another child was brought to isolation. He screamed the entire 2 hours he was in the room. Not sure what his deal was, but I heard the clinician tell him “You shut up!” and “You are not going to talk to me like that.” The women with him couldn’t both stay in the room for some reason. I could see one staying while the other went to get things, but they both had to leave.

At 12:15pm Jesse swallowed the temolozide pills. Then at 1:15pm, the nurse started the irinotecan. Jesse wanted to sit in my lap because the kid screaming that he wanted his mother and to leave him alone was freaking her out.

At 2:15pm, the nurse hooked up her fluids and we left. Only to get a phone call an hour later that they needed to draw labs. The nurse practitioner was the one who called. She had been in the medicine room talking to the family with the screaming child. I don’t understand why she didn’t follow up with our nurse about protocol labs. The nurse too dropped the ball. She made the comment to me that she’d tried to look up the protocol, but to do so required her to log in the long way.

I should know better by now. I need to call the research nurse and get the protocol for this round so I can stay on top of things. In fact I can bet we are going to miss the protocol blood draw she’s supposed to have tonight (the one we did at 11pm in round 3). But with antibody not starting tomorrow until 3pm… I will not come over here to have it drawn at 3am.

I loaded Jesse up, carried her to the isolation door, and called her clinic. The phone rang 15 times before finally someone decided to answer. Ridiculous. And it was another 10 minutes before someone came to get us. If you know you screwed up, have someone at the door waiting for me so this can happen quickly.

When we returned to clinic, I took the opportunity to grab, Jesse’s medicines. I have been asking for things in the pill form… but our main nurse practitioner fails to listen to me. Her Zantac is in the liquid form. I have also asked for zofran in the eclipse balls. I think I am going to have to pitch a fit to get that.

The nurses were quick in getting the labs and getting us out. They apologized about us having to return. I appreciate it, but they aren’t at fault.

Back at Grizzlies, Jesse complained her stomach hurt. And in a few minutes her lunch came roaring up. She feels better now, having eaten some popcorn. Tomorrow the plan is to start chemo at 12. I am pushing for that to happen earlier… maybe around 10am or 11am.

Today started at 7:15am with walking to St Jude. Mike suggested driving over. Maybe we should have since we needed to leave for the outside appointment with urology, but I said nah let’s walk it.

We arrived at the isolation doors before 7:30am. There was another family waiting. She asked what Jesse had. Said they’d been here since July, and that her home country of Peru had removed all of his tumor. I couldn’t get her to understand me (in meaning that I couldn’t get her to comprehend that we didn’t have everything done at St Jude.). I gave up and just let her talk. Mike said he felt she just wanted someone to listen to her. I am finding that more and more. They want to know if your kid has the same thing. If so then they want to compare notes. It actually sometimes feels like certain parents are trying to get into the my life is way worse than yours game. This is no competition. I just want people to stop talking to me like I am a moron.

Finally around 7:35am, the nurse came to take us to our room in D Clinic. Funny that they want you here at 7:30am for labs, but the nurse and clinicians obviously don’t clock in till 7:30am themselves.

The clinician that led us to D Clinic was the same one who thinks Jesse’s isolation is bull hockey. And she told me that 4 other kids are currently in isolation.

By 8:35am, we’d seen the nurse, gotten labs, peed in a cup (that was traumatic for some reason this morning), talked with the nurse practitioner, and saw the main oncologist. I did tell the nurse practitioner that I was frustrated with the disrespect in not calling me over the schedule. I had rearranged a meeting over the weekend because of the outside appointment with urology. Then without contacting me, they scheduled Jesse for a consult with surgery and anesthesia. Except on her schedule online, it said anesthesia and then surgery. No mention of the word consult.

And because of the lack of the word consult, I kept her from having any food this morning. In case she did have surgery, I didn’t want to be responsible for messing that up.

The wonderful nurse practitioner, who is the one who rocks, got the appointment changed to 2pm for me. She also got Jesse zofran in the pill form. She is awesome in not wasting people’s time and listening to them.

We left St Jude for the urology appointment with Le Bonheur’s urologist. Their registration is the picture of efficiency. (yeah sorry that is total sarcasm) We arrived with several people around the desk. I was waiting in line to sign Jesse in when some lady cut me off. People in Memphis are so rude… and they have those signs all over the hospital about manners… but they need to take a good look at themselves. I don’t think I have ever been to a place that is so rude.

After we signed in, Jesse and I sat down to wait. As we were waiting Mike and Chris joined us. I noticed the registration people were looking at Jesse’s file. The man obviously was trying to avoid us. And when the lady called our name, she looked all over the waiting room with an obvious facial expression of please don’t let that woman have the last name Hall. Sorry honey, that’s me 🙂 I have never seen anything like it.

She had a really hard time getting us registered because of having the out of state insurance. And she even had to have the man who obviously was avoiding us help. He was busy taking a picture on his personal phone of some lady’s baby he obviously didn’t know.

After 30 minutes, we were finally registered. The nurse had been waiting, so we quickly went back to have Jesse examined. Another nurse came into ask questions, then the doctor came in. Very nice guy. the procedure tomorrow will take him about 30 minutes. He will remove the tubes, test the flow from bladder to kidneys with a dye, and that’s it. I asked him about Jesse’s dribbling. We noticed this beginning in November. He feels that the bladder began spasming as the tumor was growing. And he feels it is still doing it now because of the stents.

I told Jesse we need to cross our fingers, toes, and eyes that we don’t have to replace the stents. Really praying hard that her body can fight off the neuroblastoma with the help of the drugs she’s had.

We left his office at almost 11am. Back at St Jude, we had a hard time finding a place to park because people who aren’t staying at the Grizzlies were parked here. Once we found a spot, we headed in to get the girls a snack while Mike ran to check on his and Chris’ flight. He returned with lunch for us. I worked while we waited for Jesse’s 2pm appointments.

At 1:30, Mike headed over to Triage for his blood draw. They have to check to make sure he hasn’t picked up any infectious diseases since the last Natural Killer blood draw. When he finished around 2pm, he searched for us at D Clinic, not realizing they had sent us to C Clinic for the consult. The lady on the desk told him at D Clinic, Jesse was in room 12. Mike walked back, knocked on the door, heard a muffled come in, opened the door, and said “Oops your not my daughter.” He walked back out and told the lady. She looked at him surprised saying, “We have 2 Jesse’s?”

Our consult with the surgery nurse and anesthesiologist was quick. I think the anesthesiologist would have taken them home… (he’d have brought them back). We ran into Mike as we were walking back to the Grizzlies house. I realized that I need to go pick up items from the take home pharmacy. Chris and I walked back over to get those items and the mail.

When we returned, I realized I forgot Jesse pill zofran. But Mike had run to the store for me, so I had to wait to go get it. While we waited, Jesse opened mail.

Thank you Mom, Uncle Jerry and Aunt Carolyn, Jeanette, and Billy and Debbie for your cards and well wishes. Thank you Mrs. Carlsen, Erin, Brianna, Mrs Perry, and Jesse’s kindergarten class for the Valentines. Jesse was so excited to get them.

Thank you for your cerealously (misspelled on purpose) funny Valentine Joel (and the cereal and spoon… now to find a bowl… haha I jest :)). Thank you for the gluten free food and puzzle.

When Mike returned, Chris and I ran over to get Jesse’s medicine. We ran into a friend and her family. Jesse was bummed that she couldn’t go with us, but we did give Jesse the chance to wave at her from the sidewalk.

Tonight we are getting ready for Mike and Chris to head out at 5:30am to return to Virginia. Then at 7:30am, we’ll start the steps to getting Jesse’s stents out. Then hopefully the first dose of chemo.

Day 68-70

Mike and Chris arrived about 12:30am. Jesse was barely staying awake, but she really wanted to see them. It is so good to all be together in the same space.

The girls went to bed, and Mike and I sat up talking for awhile. The Grizzlies house is nice in that it has 2 separate rooms, a sitting room and bedroom. Mike told me that he had to use the bathroom on the plane for the first time ever. He couldn’t find the flush button, and instead he pushed the help button.

I asked him if anyone knocked on the door. He said he made it out before the attendant got to him. But she did tell him that he was lucky to have come out before the plane started moving, or he’d have been locked in during take-off.

I slept till 8, and Chris was awake by 8:30. I took her into the hotel to get breakfast. Jesse slept the longest, as usual. But we noticed her breathing was a little odd. I’ve noticed that she often stops breathing for about 20 to 30 seconds while she is sleeping. And we’ve had her on the pulse ox machine in the hospital when she has done this. Her oxygen always stays between 96 and 100.

Today she was taking 2 huge breaths, a little breath, and then she’s stop breathing for 20 to 25 seconds. I actually took video of it to show her doctor.

Mike went over to patient services to rearrange his and Chris’ flights. They will leave really early Tuesday morning.He also grabbed the mail. Thank you Cindy, Mike, and Biscuit for the gift card to McDonald’s, foam puzzles, coloring books, food, Banana grams, and Uno cards. Jesse was really excited to have McDonald’s for lunch.

After Mike’s return, I took the opportunity to go for a run outside. I didn’t do really well because I forgot my hat and my ears got really cold and painful. But it felt great to run the 1.47 miles, which was a loop around St Jude with a few detours through parking lots.

Back at Grizzlies, I started laundry while Mike and Jesse went to McDonald’s for Jesse and Chris.

Day 69

Yesterday we went to the zoo. This time we started with cat country because Jesse was done by the time we arrived there last time. And we made it to the seals this time. I think the next time I need to pack snacks she might eat in my bag.

The trouble is Jesse takes a bit to feel like eating in the morning. She has refused breakfast the last two mornings.

Afterwards, we wondered out to Germantown to the Chili’s out there. It was good, but we have decided that both Chili’s in Memphis we have tried do not beat the service we get at our Chili’s in Williamsburg.

On the way home we stopped at Old Navy to take advantage of their jeans deal and look for a hat for Jesse.

The girls spent the evening playing and laughing. They did do some fighting, but I have noticed that with Chris around Jesse is more spunky. It really is a total shame we can’t do this treatment at home.

Day 70

This morning I gave Jesse her meropenem. Then we decided to run to Target and Kroger in preparation for Round 4 starting. Shopping is not my fort-ate… and when combined with Mike and Chris arguing over what he thinks fashion is and what she thinks it is… well there isn’t medicine strong enough to help me.

We arrived at Target at a good time because as we were leaving the crowds seemed to be pouring in. And it looked like most were after the sale on sodas.

At Kroger, we grabbed stuff to make guacamole. Mike is concerned that it’s not going to be right. Let’s see… I have not been in my kitchen or my house in 70 days. I have learned how to adapt sort of. I’d much rather be with my kitchen.

I will have to say that I am trying to figure out some way we can stay in isolation. I like being on the St Jude campus. I like the set up of the isolation rooms. The only thing I don’t really like is they only have 2 washing machines on the 2nd floor. One is broken, and someone decided to start laundry at 8pm last night combined with a fire under their butt. In other words, they couldn’t wait 5 minutes for me to return to move my laundry over to the next machine. Hate that.

Jesse is starting to obsess about Tuesday when Mike and Chris head back. I am a little concerned about Chris flying back. US Airways called this afternoon about Chris’ flight being delayed. Mike says the travel lady gave him all the information for him and Chris to fly back Tuesday morning. Guess we’ll find out tomorrow.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I woke up at 2am, hooked up Jesse’s meropenem. Then I went back to sleep until my alarm sounded at 2:30am to take the eclipse ball off. I also gave her zofran at that time to keep her on schedule with that.

At 8:30 our phone rang to let us know we didn’t have to come over for labs at 9am. But to come over for school at 10. Jesse couldn’t be with the other kids for school, but the teacher was supposedly coming to see her.

I decided to walk Jesse over to St Jude. I’ve noticed the isolation parking spots are often full. And I suspect that when people can’t find spots in the normal parking area, they automatically park there. Plus when Jesse and I stepped outside, this car had parked so close to mine that opening the driver door wouldn’t be wise. I did take a picture of their car in case they ding mine.

I was correct, all the spots were full. St Jude says they will pay for a cab to carry you from isolation to the isolation door. It’s nice of them, but I can ruck her over 🙂

When we went through the double doors, a nurse met us. She checked Jesse in, then placed a yellow gown and gloves on her. We were taken to D Clinic to wait for the teacher. Turns out, they didn’t plan this out really well. At 10am, the teacher is teaching a class. She asked if I would come down and get Jesse’s school work.

Jesse was beyond upset. She enjoys going to school. The teacher did say she’d work out a schedule where she could come see Jesse over the next two weeks. She also gave me Jesse’s work for today.

I returned to D Clinic where they had Jesse in isolation. She was talking with our child life specialist. She told me she’d asked Jesse why she was in isolation, and Jesse could tell her plus understood this is to protect other children here with no immune systems. I commented that I kind of felt like Jesse was the old man in Monty Python. “But I’m not dead yet. I feel fine. I could dance a jig.” The child life specialist told us that St Jude is extending isolation times because they are having lower infection rates. I get that too. I also feel that if they’d kept her on prophylaxis bactrium we wouldn’t be playing these games. Then on the other hand, that might explain now why she has these normally good bacteria who are resistant to lower class antibiotics appearing in places they shouldn’t be. We spoke for a few minutes about the isolation policy, and then put on gowns and headed for the isolation door.

Back over at the Grizzlies House, Jesse talked about how much she hates cancer and why does she have to deal with this. I told her that on the bright side, we aren’t going to have to deal with the crowds of people. And I was honest with her too. I hate it as well. And I don’t know why she has to deal with this.

Jesse was hungry so I ordered some lunch. She actually ate their grilled chicken. The lady who brought us the food is interesting. Not sure if having a bad day, over the job, or views all of us as lazy and needy. She asked me in a thick accent if I needed the room serviced. I misunderstood her and had to have her repeat what she said. With an exasperated look she asked if I needed the room cleaned. I asked her yes please. I don’t like having other people clean the room, but it needs to happen, and they haven’t given me the cleaning supplies.

I actually wouldn’t mind staying in isolation for the duration of our stay because the internet over here works great, and we are a 3 minute walk from the main patient building. Just give me the cleaning supplies I need, and you won’t know I am here. Jesse is over the being kicked out of places. The nurse came today to say we could leave. She put it as our visit for that day was being terminated. Jesse asked, “We’re being exterminated?”

I think that is the part of the isolation bit that ticks me off. Yes I understand RMH has no isolation room, and they want to clean the room. But in two weeks I can almost guarantee they are going to send us back there… and they are going to want us to go through orientation again. All of this will take place while Jesse is starting to feel like crap from the chemo.

St Jude gives their patients a lot, and I am grateful for that. But they need to work out the housing a little more. It would be awesome if they had more housing on the campus. The convenience of being on the campus is huge. RMH is a mile away, which isn’t bad. But you can’t walk it due to the crime in this area. Target House is 5 miles away, and from the privacy offered there… that is where many people want to be. RMH is quiet and nice, but you run the risk of sharing space with people like the greedy bingo adult ladies.

Today being Wednesday is Jesse’s Ethel study day. Since she is still on fluids, this takes 4 hours to complete. While waiting on the ethanol or placebo to do it’s thing, I went upstairs to do laundry. Jesse began to stress over her shot until I reminder her she only has 1 more shot. The last shot for round 3 will occur tomorrow.

I went to get the pizza coupon from the front desk because Jesse wants pizza again. As I was returning to our room, I ran into a family that arrived about 2 weeks ago. They asked how we were doing, and I gave them advice not to get too comfortable anywhere because you can be moved. They told me they have been trying for a week and an half to get out of the Grizzlies House (They have been at Grizzlies for 2.5 weeks). There is a waiting list for the Target House. And RMH is saying they have no available rooms. She told me other families they have met are having to stay at the Crowne Plaza.

All this makes me wonder where Jesse and I will go once she comes out of isolation. We should have a week to 2 weeks of recovery after the chemo before they make her inpatient for Round 5. I am not sure how scans will be fit in this time since her counts won’t really drop. When we called home tonight, we joked about bringing the camper and setting it up in the parking lot at St Jude. All we need is a sewer, water, and electric hookup. Also please put us in a spot with great internet reception. I can see us now with our lights on the awning set to purple at night… cooking on our grill… our portable fake campfire set out to roast marshmallows. And with the warm weather, our windows open to enjoy the great spring warmth. We could even bring Maggie to be our greeting dog (cause that is really what she does at a campground… everyone is her friend). 🙂

The doctors came in around 2pm yesterday saying what infectious disease has been saying. Until we know what this infection is, they can’t decide on a plan. I waited till after Jesse got her shot, then ran to RMH to grab a shower, clothes, and food for us. I was gone for 30 minutes when the phone rang with a little voice asking when I would be back on the other end. I was back within another 20 minutes.

Jesse zonked around 8pm last night. I couldn’t sleep.

In the morning, the nurse came in for a lab. Jesse was already wide awake and sitting with me in the chair. Since the lab had been late putting the urine sample in the tester, they still didn’t know what she has.

We did find out her ANC had risen into the 9000s meaning the shot can stop. But we will have to continue the 2 shots of il-2. Jesse wasn’t thrilled about that part of it. Then the wound care nurse came to check her skin as part of a monthly study they are doing.

The nurse practitioner stopped into see us. She was talking about discharging Jesse back to RMH. And she began asking me about what medicines we would need. This reminded me to ask what medicines can we switch to pill form. Unfortunately I wasn’t able to get her to change neuronton to pill form. This is a really nasty tasting medicine from Jesse’s reaction.

After she left, I went down to Jesse’s teacher’s office to get her schoolwork that she missed yesterday. I figured this would give her something to do plus keep her from getting behind. The teacher was great in giving me the work, glue, and scissors. Jesse was really excited to work on putting Washington and Lincoln together.

As she was working on it, the nurse practitioner returned. I think she had a question, but I am not 100% sure why she came back to see us. As she was talking to us, the infectious disease fellow poked her head in with an announcement.

Good News: No infection in her blood.

Bad News: Same kelbsellia bacteria.

She instantly began talking about isolation and needing to get the stents out of Jesse. I asked them how isolation would work and neither could give me a straight answer. I also asked why she hadn’t had a urine analysis since Sunday night. They did agree she needed to have a sterile as possible urine collection the next time she needed to go. (That was fun… she’s like that horrid cartoon on Disney in the morning called Nina has to Go – she waits till the minute it’s an emergency to really have to go).

Around 1pm, we gave Jesse her il-2 shot. And once again she choose me to give her the shot over the nurse. She asked the nurse why she was wearing the white gown. We explained that since Jesse has a bacteria that is resistant to most antibiotics, the nurse has to take precautions. (The infectious fellow kept saying resistant to all antibiotics, but interestingly meropenem seems to be working… hmm.)

Her main oncologist stopped by around 1pm. He had not read her chart yet, but felt that we should have a consult with urology. I think he is hoping to get the stents out without having to replace them. I am all for that. And when I told the nurse Jesse’s tumor shrunk by 32%, she was really excited and very positive about the stents might not being needed. I asked him why this was considered a UTI when she only has 50,000 colonies growing versus the 100,000 they have told me before. He explained that since she has had this happen twice that is why they are considering it a UTI.

The dentists stopped by to check the loose veneer. He didn’t feel that it was a huge deal. He did say that her front two teeth are very close to coming out because the roots aren’t visible on the x-ray any longer.

The eye doctor stopped by to test Jesse’s new glasses. She was really pleased with how well Jesse can see with them. She told me she’d been really worried since we saw her last week. I really appreciate that she was so worried about us to make sure that Jesse got what she needed. 🙂

The nurse practitioner returned again to let me know that Jesse is going to be in isolation for 2 weeks. She has to finish the 7 to 10 day course of meropenem. Then 48 hours later she has to have a clean urine. Then 48 hours after than she has to have a 2nd clean urine. She told me that I would have to call patient services to get everything set up (turns out that isn’t the case). She also said she was keeping Jesse on half maintenance fluids for another 48 hours. She wasn’t sure where we’d be, and therefore was going to have IV pharmacy deliver to the room.

I asked her how this would affect the start of chemo, the NK cells, and Mike coming to Memphis. From talking to her and the transplant team coordinator, things for Round 4 look right now like they will happen as planned. Man, I hope so. Jesse and I need to go home. I figure it will be almost day 100 before we can even think about setting foot in our great little house.

The IV pharmacy lady called me incredulous again. “Do you know how to give eclipse medicines through IV lines? Has anybody trained you?” All of this asked in the demanding tone again. She is nice to meet in person, but on the phone… she has the tone that we all are morons bent on killing our kids even though I brought her here for treatment.

The nurse suggested I call patient services to make sure everything was straightened out. From them I found out, we had to get everything out of RMH. We’ve been kicked out. Really messed up in my opinion. In two weeks, they will probably place us right back there. I actually am hoping not. And with the big gun rounds coming up, why not let us stay in St Jude, then a week at the Grizzly House? From the way round 5 and 6 are described to me, I would not be surprised if we don’t spend 3 weeks each time in St Jude.

Either way, I had to run over to RMH and get all our stuff. The house manager was wonderful when I explained to her what was happening. She told me that we didn’t have to clean the room because they would do a deep cleaning. It took about two hours to get everything packed. And when I went downstairs the manager had left. The girl on the desk has no customer skills. I have noticed her attitude before.

She asked what I needed. I explained that I needed to turn in the key and vehicle tag. She called the house keeper, then returned to sorting mail. After a few minutes she looked up at me :”House keeping will meet you at your room.” And of course, house keeping was in no rush either. I was feeling stressed to get back to Jesse. She checked the room out, was pleased, and wished us good luck.

Back at St Jude, Jesse was getting a dose of meropenem. When that finished, the nurse hooked her up to the new fluids in backpack Fred. Then I went to pharmacy for the medicines and to find a wagon. Jesse was very excited to wear a yellow safety gown. To me it is crazy that they had her wear the gown and gloves, but no mask.

We got to the Grizzly just a the van unloaded with many travelers. They have placed us in a room with a door to the outside, and Jesse is not allowed in the interior of the hotel. She was hungry and asked for pizza. They have a deal here where you can order a pizza with a coupon that gets it for free. Jesse ate 2 pieces, and I was bad. It was easy food on a frustrating day. Yes I will pay for it tomorrow when I am itching everywhere.

Jesse’s next dose of meropenem is at 2am. The clinical pharmacist who stopped by told me 6, 2, and 10. I am thinking she had that backwards… 2, 10, and 6 is how this one is going to work out.

The good news is the internet here in this room is very promising. It has stayed up the entire time I have been typing. Yeah!!

Kind of feel like we should be wearing shirts saying we carry petulance and disease. Proceed with caution. For the next two weeks we have to enter St Jude through a special door on the side of the building. She can’t be in class with her classmates. Jesse is really depressed about this. I am hoping the schedule is correct in saying her teacher will come to her.

What blows my mind about this isolation door is that it enters through A clinic. A clinic is the Leukemia clinic… the kids who are often at 0 ANC. I just don’t understand the thinking for having her enter through that door.

Thank you Willie and Renee; Jim and Jackie; Mrs Delo; and Mt Pleasant Baptist Church Tuesday Morning Bible Study for your cards and well wishes. 🙂

Thank you Inee for the stickers. Jesse was very excited. Thank you Jimmy, Melinda, Emileigh, and Landan for the “Froggy First Kiss” and Reese cups. Thank you Abby and family for the Doc McStuffins blanket, bracelet, necklace, and hand drawn card. Jesse loves the snuggy, and she fell asleep wearing the bracelet last night.

Thank you Olive Branch Christian Church for the clothes, goldfish, gluten free food, card, and M&Ms. Thank you Sandy for the bracelet kit, headband, necklace, and Hello Kitty. Jesse was so excited about the necklace because it is exactly like the one she gave her sister. 🙂

Thank you Cheryl and Rick (sorry if that is wrong) for the coloring books. Jesse was so excited about the Hello Kitty coloring book. Thank you Mount Vernon United Methodist Church for the prayer shawl in purple, Jesse’s favorite color 🙂

Thank you Ginger for the Starbucks card and support. I really appreciate the coffee thought… and with the timing of medicine I am going to need the caffeine.

Thank you Meme and Papa and Aunt Phyllis for the support. Jesse has been super excited to show her sister the Panda Bear shop at the zoo. Thank you Terri and Jim for the card hat. Jesse enjoyed wearing it today.

I hate the internet here. It’s like a double punishment. “Sorry your child has cancer, you want to get on the internet and attempt to be productive… sorry we had to take a break to laugh and look down on you for wanting to keep your house.” RMH won’t let you get on certain sites and doesn’t work well with ipads. At St Jude, the internet is up and down, up and down. I am so freaking frustrated. I need to work and I can’t get online to get a freaking thing done. And calling the technical support people here just leads to a “go out in the hall.” Yeah that’s effective.

On Saturday, Jesse and I hung around RMH. We went down for the lunch and bingo. Jesse played till she won, then she was done. There were 2 old ladies down there. Each had 4 cards. I’ve noticed these two around the house and manners aren’t their strong suit.

We returned to the room to relax. Jesse was able to keep down all the food she ate. And because she was feeling better, she had several rounds of “I want to go home.” I want to go home too. I am starting to not this place. Plus I need some time to recharge, and I can’t get it. I also have discovered that I don’t like sharing a kitchen with a bunch of people I don’t know. And that I have the worst timing. I seem to always catch the dishwasher when it needs to be emptied. And actually I have been trying to think of foods I can make that don’t require me to use their dishes. Petty I know, but I’m starting to loose it.

Sunday, Jesse and I ran to Kroger for some groceries. Then we reorganized our room at RMH. About 9:15, I noticed Jesse felt warm even though she was complaining about being cold. I took her temperature, 101.1. I called the Medicine Room, and they requested I bring her over. Jesse was yelling at me that she didn’t want to go. I didn’t either, but we needed to see what was going on.

At the Medicine Room, Jesse’s temperature had risen to 101.3. They cultured her lines and asked for a sterile urine collection. Then they gave Jesse meropenem. Within an hour, her temperature had dropped to 99.7. The urine was cloudy. Because of the cloudiness, the resident (who did her med school at EVMS) admitted Jesse. Around 1am, we were finally settled upstairs.

Today, the nurse practitioner has come in to tell us the cultures show no infection in the blood. The urine does show something. Until the cultures come back, we won’t know. I have also been talking to them about one of Jesse’s veneers. I am not sure if she has knocked it loose or the tooth underneath is getting wiggly.

After she left, the Ethel study nurse stopped by to see if we needed anything. We are good for the moment. Then the nutritionist stopped by. Luckily she just commented on Jesse maintaining her weight and left. She did offer to order anything that Jesse wanted. I should have asked for McDonald’s for Jesse. She absolutely has decided that the food here is horrid.

And maybe if the stinking internet worked better I wouldn’t feel so frustrated. I am getting to the point where I can’t stand this place and Memphis.

Now we are just waiting till tomorrow to get out. Supposedly they will use Jesse GM-CSF vial I have at RMH, but no one has come to tell me for sure. It was a case of let me talk to the doctor to see if we really have to give the shot. I am going to have to go to RMH to get clothes and a shower anyway. Plus food that Jesse will eat..