They have put new furniture in the patient rooms for parents. The old blue chair would recline so that I could sleep next to Jesse holding her hand. But the new chair… it only goes half way. For several hours I tried to sleep, but at 5:45am I woke up with both legs and an arm asleep with my head on her bed. I am sure the nurse probably puzzled for awhile how I got into that position (I was puzzling the same thing when I woke up.)

The nurse had mentioned she needed a urine sample from Jesse between 5:30 and 6. I got Jesse up, she used the bathroom, and then realized I was moving to the couch to sleep. Immediately the water works began. I have been hiding my fears from Jesse, but she is not stupid. When she sleeps she wants to know that someone she loves is nearby in touching range.

I told her that she could sleep with me on the couch. Jesse asked if this was okay because their rules don’t allow parents and kids to sleep together. I told her that since they bought horrid uncomfortable things for parents to sleep on, then they could kiss my grits. The person who purchased this furniture should have slept on it overnight first.

Around 7:30, her day nurse arrived. It’s awesome that they remember Jesse. She premedicated Jesse with zofran and benedryl for the carboplatin. This started at 8:20am. While it was running, a nurse practitioner came in. I asked her about the aprepitant. Of course she had nothing about it on her list to check. I knew that it would go no further than her clinic nurse practitioner. This different nurse practitioner wrote it down to make sure to ask about.

While the carboplatin was running (which can cause long term hearing loss), I ran down to grab breakfast. Jesse only wanted some Powerade. And since we were getting ready to do etoposide, I wasn’t pushing food. As I was downstairs, I ran into her child lfe specialist. She mentioned something about sitting down in a meeting with everyone and airing my concerns. No thanks. Yes I know that is the chicken way, but i don’t have the energy to do that. Plus I can just tell that it won’t be effective. And I’ll be stuck dealing with her in clinic… in the sappy fake sweet voice. I don’t have the energy to deal with it. When I returned the dietician appeared asking what she’d had for breakfast. I told her, “We are starting chemo.” I am not sure if she got it, but luckily she didn’t stay long. And this was a new dietician. I guess the other one was hoping to send her in to have more success? I am not sure on what. Jesse does eat… it just doesn’t stay down.

At 9:30, we started the etoposide. In 2 minutes, Jesse did all the major side effects. First she coughed, then she started turning red and clutching her throat. Her cheeks also looked to be swelling. The nurse immediately stopped the etoposide, grabbed an empty syringe, and started drawing blood and etoposide out of Jesse’s line. As she was doing this, Jesse projectile vomited all over her. This of course really upset Jesse. The nurse never batted an eye.

Fortunately Jesse’s oxygen level never dropped below 96, but she complained about her throat hurting. The nurse called for the doctor. But the nurse practitioner was the first to come. She listened to what happened and decided that Jesse needed the hypoallergenic version called etopophos. I asked, “Why not start with etopophos?” Turns out that it is expensive to make, so they start with etoposide in hopes to save money.

While waiting for the etopophos to be made, Jesse needed to give another urine sample. She actually asked the nurse to help her use the bathroom. I am glad she is comfortable with the nurse. The nurse brought Jesse some paint. She painted while I ran an extra CAD pump and batteries I have been asking where to take to ACU Pharmacy. They actually called me saying they were having a shortage of pumps.

As I walked downstairs to get it out of the car and take it to pharmacy, I noticed several groups here to tour St Jude. I know that helps them with fundraising, but today I wanted to stop and say “Do you really know what this is like? You get to come tour here and feel good about yourself afterwards. They tell you all the stories of the kids they have saved (one of the tour guides is one they saved.) and you get to feel all fuzzy. Good for you.” But I told myself that these people are all going through things or have gone through things that have changed their lives. I don’t know where they have been in life. Then I wondered if I looked horrid because of the looks of pity they kept giving me as I passed. And I don’t think that it helped seeing a note on a patient door asking people to leave prayers on the cart to the side. Plus to ask the nurse before entering.

I returned to the room in time to meet the research nurse. She had the new round protocol for me. Then it was time for rounds. They have changed rounds to being outside the door. The nurse practitioner had found that aprepitant interferes with ifosphomide, a chemo she’ll get after etopophos. Bummer 🙁 We worked it out where she’ll get ativan and zofran every 4 hours.

Jesse a little bummed she couldn’t come to rounds. And I think she’d have been able to hold her own 🙂 The fellow and nurse practitioner did say her main oncologist was coming by this afternoon. And they talked about her swelling groin. It turns out that the tumor is in the area of that right groin. When she up standing a lot, the blood flow is restricted in her labia causing the swelling. There is not much they can do about this. If the kidneys get larger, then they will replace her stents.

About 12pm, Jesse asked for yogurt and pretzels. I am hoping that when the etopophos final arrives all that food will stay down. As 1pm rolled around, the etopophos arrived. At the same time, Jesse’s class called to FaceTime. The nurse waited until Jesse was done before giving her the etopophos. This was a good idea. A few minutes in we had to give her Ativan to help her stomach, but that didn’t stop her from throwing up.

By 3:30pm, she felt like eating again. She ate a bag of popcorn and then 2 pieces of toast. The main oncologist came in while she was eating. He told us that the official reader of the scans still hadn’t read them. From what he saw the tumor looks stable. But we really need this chemo to shrink it further. If it doesn’t, then in his opinion we might have to put the stents back.

Jesse’s chemo finished around 5:15pm. An hour later everything she’d wanted to eat was back up. She is still fighting sleep. We have the ethanol to finish, and then she’ll be done for the night. For the last hour Jesse has either thrown up or grabbed the blue bag in case.

Day 93

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

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

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

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

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

Day 94

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Today Jesse was schedule for a CAT scan. The doctor had moved this up to take her scans before the surgery conference tomorrow. I am really tempted to borrow a lab coat and a wig to be at the conference. I don’t want to hear any of the other kids. I just want to hear Jesse’s and hear it straight.

I laugh because the 3rd street entrance has a sign that says “Community and Communicate: Notice the Similarity.” Stop directing the signs at your visitors please. Direct them at your employees. I am really concerned that they will see me on Thursday for her clinic appointment, and I won’t get the straight scoop. Surgery is a big deal for anyone. I need to know the correct information to make an inform decision concerning Jesse’s welfare. If they try to remove any tumor, her intestines will have to be moved. This will put them to sleep. I’ll just have to bring my saddle to clinic on Thursday and start riding people to tell me the whole story.

I want to know what good putting her through surgery will do. They are going to have to cut scarred tissue. How much can they actually remove? Also if they open her, move the intestines, and decide they can’t, why should I torture her with that? And how long will she take to heal? She has seen the medicine tubes down other kids’ noses. This is a huge concern to her. If we move the intestines, then she will have to have an NG tube to remove stomach bile. How will this effect starting chemo? How much bleeding will occur? Her chance of survival having surgery: better or the same as not having surgery or you can’t tell me because everyone is different? And if she has surgery, you aren’t removing everything anyway because you can’t see microscopically. Plus it’s attached to major blood vessels. How are you going to get the tumor out without cutting her causing a bleed out?

I am trying to think of all the questions I need to ask. I guess I should ask too: “Why can’t you people communicate with me and stop talking around me, just because I don’t have a doctorate or a nursing degree?” At this point I even wonder if I am going to be allowed to have a say or even talk to Mike about his opinion on it all. And I am really scared that this is not the right decision for her. Yes she might die from the cancer, but if she dies on the table… well that is time we lost. Then there is the other side: if we take out some maybe we are getting the part that wants to keep growing and trying to steal her life.

Jesse saw the word “CAT” on her schedule last night. She has been concerned since last night she was going to be turned into a cat. I pointed out several times that she has not ever become a cat from the scan. Then I decided since she was interested in believing me, she could find out for herself.

She was really chomping at the bit to go get the CT Scan over with. But I told her we had contrast to drink first. This also gave me time to do laundry and rearrange everything in the room to minimize what we absolutely had to have in this room. My thinking is that I don’t know when they will kick us out, so I have to be ready.

Jesse could not eat after 7:15am. She did have to drink contrast with 6oz of liquid at 8:15am, 9:15am, and 10:45am. I am not sure what was in the contrast, but she was dancing around the room and laughing at everything. Kid even did 20 squats.

At 10:50, we went over to St Jude. The isolation nurse had no record of Jesse coming. After a few moments and phone calls, they figured out Jesse was going to D clinic to wait for the call from Imaging. The nurse shook her head when she got off the phone. She had a hard time getting them to understand her. I told her I felt her pain. Jesse was busy cutting up and not paying attention to anything we were doing. Glad she is feeling froggy.

She put us in a room to wait. After 10 minutes it sounded like Imaging was ready. I could hear the nurses talking about how we should have just gone straight over there. Once at Imaging, we had to wait behind a curtain till they were ready.

In the room with the CT machine, they hooked Jesse to a machine that would give her the final dose of contrast. The bed slid in the donut 2 times, then slid in while the CT Scanner began spinning. In 5 minutes, it was done. Jesse remained really calm throughout all of it. Then we were out the door and back to Grizzlies. As we were walking back, Jesse suddenly said, “Yeah I’m not a cat! I’m still a human.”

I fixed Jesse some lunch, ordered lunch for me, watched her eat 2 more things of GoGurt, and found out we are supposed to be leaving the Grizzlies House. About 1pm, a lady knocked on the door. “You leaving today?” I looked at her confused. “Not that I know of.” “You’re on the list to be gone. You better call patient services.” All of this in the tone of “You best be getting off my property before I find my dog or gun.”

I called patient services. They did have us on the list to be discharged, but from that list they had no mention of where to. I told them as far as I knew Jesse is still in isolation. The lady said she extend Jesse’s stay at Grizzlies through Friday morning breakfast. And to call back when we knew what was going on. Then she asked if we wanted to come get mail. I told her that we couldn’t because Jesse is in isolation and I am the only one here with her right now.

Around 4pm for some reason, her stomach got the better of her. Shortly after there was a banging at the door. I figured it was the people coming back to tell us we had to vacate. Luckily it was a very confused lady.

Tomorrow Jesse has school at 8am (for those of you who have witnessed the “what do you mean I have to wake up,” this should be fun.) Then at 1:30pm, they will inject the MIBG isotope. This afternoon Jesse told me I was insane. I told her that it is because I live with this animal that is 104cm, 15.5kg, and thinks I’m the maid/butler/tech support/chauffeur available at her whim.

Thank you Wilma Cropper Circle of the Kings Daughters and Nancy Hula for your support.

Day 88

In the morning, Jesse had clinic at CHKD. I only saw her for ten minutes after we went in the clinic. She was busy visiting everyone in the clinic. Her oncologist told us it was E. coli in her urine. That was a big surprise. I was thinking it was the klebsilla again.

We were out of clinic in about 90 minutes and back up the road. Mike invited us to have lunch with him at work. Jesse enjoyed eating with him and his co-workers. Thank you to all of them for the support they have shown us. We really appreciate it 🙂

We had dinner with Melinda, Emileigh, and Landan, then Jesse, Mike, and I returned home.

Day 89

In the morning, the three of us went to breakfast. Then to the store to pick up a few things for the little party we had for Jesse before heading back.

Thank you to those who could come. And hopefully we’ll get a chance to see everyone when we return.

St Jude also sent Jesse’s mail to the house. Thank you Inez for the coloring books and crafts. Thank you for the cards Jill and Mark Dixon, Mt Pleasant Baptist Church Tuesday Morning Bible Study Group, Knob Creek Methodist Church, Louise Marie, Daphene,,Biscuit, Grandma, Aunt Carolyn and Uncle Jerry, Betty, and Nancy and Jim.

Day 90

In the morning, we went to breakfast with Melinda, Emileigh, Landan, and Wendy. Jesse seemed to be handling leaving better than I thought she would. Even at the airport she accepted leaving her dad, sister, and friends better than I thought she would.

In the bathroom, there was a girl bawling. This did set Jesse off a little bit. I overheard the teenager crying about a girl who died running the Shamrock Half Marathon. I felt so bad for her and the girl’s family.

We boarded our plane to Atlanta. Jesse began begging to go to the bathroom. Because we were taxing, I didn’t think she could. Once we were in the air, I was able to get her to the bathroom. And unfortunately she got sick… even after giving her the ativan.

In Atlanta, our flight was delayed 45 minutes. It was here that Jesse really started wailing. Pretty sure that helped some passengers volunteer to wait for tomorrow to fly to Memphis. Her little area was hurting her.

Jesse really enjoyed our row mate. And she was super nice. Even asked us to try to keep up with her. In the Memphis airport, a gentleman had waited around to offer to help with getting our suitcase off the conveyer belt.

We did see the people with wheelchairs for Jesse this time. While it was nice to have that… I would rather just throw her on my shoulders and go. Felt that we stuck out more than I would like to have in both airports.

Once we had our luggage, I went to find us a cab. We had a voucher for the cab from St Jude since Jesse is still isolation. I think that driver would have rather ended up being mugged than carrying us to St Jude.

By 7pm, we were back at the Grizzlies in the same room we left. I went out to start my car since it had been 10 days. Nothing. I decided I would rather deal with it on Monday.

Day 91

This morning Jesse and I were expected at St Jude at 8am. I thought I’d have to wake her up, but she surprised me by waking up on her own. And immediately bursting into tears about not being at home and not wanting to be here anymore.

We have been telling that she does have a choice. However the choice to go home without finishing treatment will have definite consequences: death. Yes even though what we are doing now doesn’t guarantee she will live.

Jesse was so upset by the time we got to clinic, her blood pressure read 128/90. The clinician opted to try her blood pressure again when Jesse had calmed down. By this point, I will be honest… I was over her listening to her cry. I don’t want to be here either. I told her she had a choice. Either we finish out the next 2 rounds positively or she can be negative. I did tell her she would heal faster being positive.

Jesse was still crying with the clinic nurse arrived to draw labs, get sterile urine sample, and fecal swab. They weren’t aware of Jesse’s stay at CHKD or that she was on meropenem for 7 days. As she was finishing the Nuke Med tech arrived. I asked if he was giving her the MIBG radioactive isotope. On Jesse’s schedule, she had 2 Nuclear Medicine injections listed. Since I didn’t have a copy of the schedule for the day, I thought Jesse was still getting the injection.

When we pulled up her schedule, the injection for Monday had been removed. Instead the doctor ordered a test with a radioactive isotope of her kidneys today. They injected the isotope, then drew blood 1 hour, 2 hours, and 4 hours afterwards. This allowed me to get her medicines straight, get supplies, and contact the travel office to return the card they gave us for baggage.

While we waited, the nurse practitioner came in. They are trying to figure out if Jesse will stay in isolation. The oncologist came in after awhile. He feels that Jesse has bacteria that is knocked down by the meropenem, but not eradicated. As he was examing her, he mentioned surgery. I thought he meant surgery to open her if she has an abscess of infection. But talking to the nurse practitioner later, they are going to talk with surgery about removing some of the tumor. I asked her if that was even possible since it was radiated. She said they don’t know, but want to take the scans before the surgery conference on Wednesday at noon to have them decide.

The doctor also said that if nothing grew in the culture they drew, she would be out of isolation. We’ll see if that holds true.

We left at 1pm. I called security about getting a jump for my car so I could take it to Gateway Tire on Popular Street. They had installed a new battery for us in January or February, and Mike was impressed with their service. I am too. They were really nice to put the car right in the shop. The manager told me it was the battery terminal, and they would have it replaced shortly. Within 30 mintues, they were done. When I asked him what I owed, he wouldn’t let me pay because they should have fixed that when they installed the battery.

After we left him, we swung by Kroger to get some snacks. And then back to the Grizzlies. Tomorrow Jesse will have to drink 3 rounds of contrast before her CT scan.

Day 86

Today Jesse had an awesome day. She got to visit her class at Norge. They were so excited to see her. And she was beyond excited to see them… in fact she woke up at 6am because of the excitement.

She woke up right when I was hooking the meropenem ball to her for the 30 minute infusion. Thankfully she watched TV so I could catch a few more z’s. Christine woke up a few minutes after her dad left for work and climbed in the bed with us.

At 8am, I finally convenienced myself that I had to get out of the bed and start my responsibilities. And right off I was fussing at Christine and Jesse about things they’d left laying around. I am a little angry with myself for having this grand illusion of coming home and not having to tell them to both clean up after themselves. After getting Chris on the bus, Jesse and I headed back to the house. We had 30 minutes before she was to visit her class.

At 10am, Jesse and I arrived at her class. Mrs Carlsen, Mrs Perry, Mrs Brown, Mrs Badlam (sorry if I am misspelling that), Mrs Green, and the class were so excited that they had planned a party for her. Jesse loved the dancing. Thank you for the food (we do need to get her to gain weight). Thank you for the gifts and cards. She is so excited to try the cookie tonight. I am making her share it with her sister. Thank you for the purple J. And thank you for the Roadrunner hat made by Mrs Brown. (Please excuse the look on my face in this picture… I am not sure what I am thinking… I must have been laughing about Jesse’s head hitting the blow-up planet.)

While we were with her class, several people stopped by. The word that Jesse was visiting for the day spread quickly. Mrs Turner stopped by with her 5th graders to play Jesse a song they’d learned on the ukelele. Then the kids spent time with the kindergarteners showing them the chords.

Chris, Emileigh, Landan, Abby, Aaron, Brianna, and Erin were allowed to come from their classes to see Jesse. Chris was beyond excited and begged Jesse to stop by to see her class. On the way, we stopped into Mrs. Daughtery’s class to say hello. After visiting Mrs Wheeler and Chris’ class, we visited Emileigh’s class in the library. From there I had Chris and Emileigh stay with their classes while I took Jesse back to Bright Beginnings to visit Mrs. Ro and the staff.

Thank you Shanna (sorry if I am misspelling your name) for the crafts and food. Thank you anonymous person for the Frozen doll. Jesse got into the crafts this afternoon 🙂 And is playing with the doll now.

One person asked me what was the long term prognosis for Jesse. At this point, we don’t honestly know. And until someone can definitively say “We have the definite cure,” Jesse will never be out of the woods. She has heard me talk about a boy who fought cancer 4 times. Even she has said that it might come back. We pray every day that it won’t. I keep telling her that we must play the hand we are dealt with the best grace we can.

One person commented that you make the best of everyday because it’s a gift. I joked that yes you try, but some days life gets the best of you. I am sure that Christine will have mixed emotions about us leaving. Part of her will hate it, and part will like it because she can go back to doing more of what she wants. She won’t have me telling her to clean up after herself or that if I tell her to brush her hair one more time, I am shaving it off. I have no illusions that she gets Mike to let her have her way.

I worry a great deal about Christine. I don’t want to be controlling, and I know that her dad and our family and friends keep an eye on her. Plus she needs to find her own way in this world, but the attention that Jesse gets due to circumstances has to be hard. She is more sensitive than Jesse. Basically Christine is a mini-Mike, and Jesse is my mini me.

We left around 12pm. Jesse rested the rest of the afternoon.

In the evening, we had dinner with friends and enjoyed being home. Jesse did have to have some ativan because smells were getting to her.

Day 87

Today we took Chris, Emileigh, and Landan to the bus stop. Then I worked, and Jesse sat in my lap watching TV. In the afternoon, her Uncle Jim and Aunt Terri stopped by. And tonight some friends are bringing pizza for Jesse.

So I am feeling a little frustrated. Hospitals are the equivalent of prisons. It takes forever to get you out the door and into the world where you can really rest and relax. Plus we are only here for 10 days, Jesse and I need all the time we can get at home safely.

On Sunday, we cleaned and played. Monday, Jesse and I had to travel to CHKD for lab work. No biggie because we’d get to come back to the house. Jesse is wanting to get to school for a visit in the worst way.

Before we headed down we waited to put Chris, Emileigh, and Landan on the bus. Casing them around in the morning to get ready for school was actually riot once I got them on the bus. Landan wanted to wear Jesse’s pants to school. I was able to compromise with him on a shirt. Chris and Emileigh spent 30 minutes doing their hair. I finally told them it was windy outside, meaning their hair was going to move.

It was fantastic to see everyone and visit with her oncologist. He put it the best I have heard about St Jude. They are the major leagues. To which I replied, I am obviously a minor league person.

By 12pm, Jesse and I were headed up the road to get Christine off the bus. While we were waiting, Jesse unfortunately threw up. I gave her an ativan to calm her stomach. I guess I have gotten so used to the state it puts her in. I don’t even really notice that she is drugged. At the bus stop, she kept poking McKenna, our 2 year old neighbor, trying to figure out what she was wearing. McKenna just looked at her like “what are you doing?” She also got fixated on a package they’d received from Target.

After getting Chris off the bus, we stopped to speak to Aunt Phyllis and Aunt Dale. Then she ran around in the yard playing with Chris.

In the evening, Joe, Talyor, Jen, Melinda, Landan, Emileigh, and Jimmy came for dinner. While Joe and Taylor were sitting with Jesse, they noticed she was feeling warm. Taylor took her temp: 100.9. we got her undressed and took it again: 100.2. Jesse was laughing and talking with us. She wasn’t channeling the normal diva.

At 9:05pm, I took her temp again: 100.4. So we started the hour wait. At 9:50, 100.5. We put in a call to her oncologist here. He wanted to culture her caps to be on the safe side and give her either rocefrin or meropenem. If we did the mero, we’d need to spend the night. From having to go through the Emergency Department here, we figured it would be six half, one dozen of the other to go through staying the night.

Jesse was far from pleased about this, but when her temperature hit 104.1 this morning at 4am, I feel that we did the right thing. Now we are waiting to see if they can get her meropenem eclipses from Sentara before we can leave. Her urine is a little cloudy again.

I am so tired of this. Here we are on a 10 day leave from St Jude and can’t even stay out of the hospital. I am so tired of cancer and the side effects of treatment. And as tired of it as I am, Jesse is probably 3-fold as tired of it. And the other part of me says why can’t I have two normal kids with the occasional cold? What did I do to the universe to make Jesse suffer? (Yes I know the answer is always nothing. But occasionally I feel like it was something. Why should any child have to suffer through this crap?)

It was hard not to drive down the road last night looking at other cars wondering if their lives felt as screwed up as mine. And part of me saying well yes they might be. I thought about the man on the plane who sate next to us and lost his daughter last year. And the little boy flying alone to visit his deceased father’s family in Florida because his mom couldn’t stand to live in Florida after his dad died.

Right now we are trying to get the eclipses sent to the house for Jesse and move the discharge process along so she can enjoy some of this day outside of a hospital.

It’s now later, and we are home. By 3pm, we were able to leave. Jesse is really happy to be home.

Day 82

Jesse and I were so excited that we both woke up at 5am on Friday morning. Before we could leave, we had to go over to St Jude to have labs drawn. And I needed to get the tickets. Jesse was begging to head to the airport even before we left for her labs.

The isolation nurse took us to room 10 of the isolation area. At 8, a nurse came to draw 3 vials of blood. She asked what else we had to do after seeing her. I explained that I needed to pick up our tickets. She called to patient services to see if they were ready. They weren’t.

At 8:30, I went down to patient services. They told me I would have to call the travel office. I called the travel office, but instead got an outside company who didn’t know what procedure for picking up tickets was. And because of that she needed to call someone.

Fortunately the ladies at the window saw me waiting and called the travel office directly. The woman who came out to give me the tickets was a little grossed out by me. Oh well. She gave me the tickets, explained what I needed to do, and I headed back to Jesse.

We still have 45 minutes before the taxi would arrive. Jesse actually was hungry and ate a bowl of yogurt and cereal. At 9:45am on my phone, there was no taxi. I called the taxi company. The dispatcher says to me, “Oh you wanted a taxi at 9:45am. I’ll send one at that time or are you ready now?” Let’s see I called the night before from the Grizzlies house (which she obviously knew because she knew where I was even though I was on my cell phone) and asked for a cab at 9:45am on Friday morning. The time is now 9:48am, yes I want the taxi now. So glad I called for that in advance of the real time I needed it.

The driver who picked us up had a guy riding with him whose job was to put luggage in the van. The driver himself was large to the point where I am sure he isn’t able to move. It’s really sad because he is an extremely nice guy. He complimented Jesse on her speech and grammar use. His phone rang while we were going down the road. We did weave a little on the interstate while he answered it. For the rest of the ride he complained to this friend on the phone about how the ice kept them off the road for two days.

At the Delta outside counter, a very nice man helped us get checked in. Then we headed to security. I am sure that TSA sees a lot, but good grief… they need a course in friendliness. The woman got really angry about the box of labs I was carrying. Sorry for holding up the line, but quite frankly I am moving as fast as I can.

Once Jesse and I got situated, we found our gate and got a little snack for Jesse. I checked in with the desk to get our assigned seats. While we were waiting, the clerks began announcing they needed 8 to 10 people to take a later flight. They would give them a $400 voucher. I overheard several people say they’d rather wait to see if the price went up.

At 11:30am, we began boarding. Jesse and I ended up at the back of the plane with no window. She did great with take-off, but unfortunately as we descended into Atlanta, her stomach got the better of her. Thankfully her dad had reminded me to pack blue throw-up bags for her. I gave her some Ativan, and she slept through the landing.

In Atlanta, we were supposed to have been met with a wheelchair and escort. Didn’t see anyone. I asked the attendant where A concourse was at and then had a slight panic attack over her reply. “Down the escalators to the tram.” Tram! I have 30 minutes before the flight boards and I am on the T concourse. Luckily it wasn’t as bad as I thought 🙂

I was concerned at the escalators that Jesse would freak about riding down them. Good ol’ Ativan. She thought that was fun to ride down on my shoulders. In the tram I was concerned again, but Jesse said weee when the tram started. Luckily A concourse was one over from T. And by 3:10 we were at our gate. And by 3:45pm we were in the air.

The flight to Richmond is when Jesse’s diarrhea from the irinitecan tried to kick in. We luckily made it to the bathroom twice without accidents. The gentleman in the row with us was very nice. He makes buttons in Minnesota. He offered to make us some buttons. I appreciate his offer.

As we were getting off in Richmond, a man a seat in front of us complimented Jesse on how well behaved she was for the flight. I wasn’t thinking at the time, but I should have replied with “Well yes, it’s all thanks to drugs.” I think he thought she was younger than she really is and was expecting her to be screaming.

I did notice something yesterday as we traveled. People kept looking at her, but they all smiled. It wasn’t a look of feeling sorry for her, but a look of joy to see her. And she traveled yesterday without her hat. I had it with me, but she gave it to me in the airport, and didn’t ask for it back. Many people spoke to her, and she answered them back.

Mike and Chris were waiting for us at the end of secure area. It was so good to see them. Once we collected our suitcase, we hoped in the truck and headed down 64 to Williamsburg. As we were driving, Mike suddenly noticed the fading of a rainbow. It was so good to see that rainbow. So good to be back in VA.

At the house, Maggie, Melinda, Emileigh, and Landan were waiting to greet us. Maggie was so excited, and I am sure that this has been the most confusing for her. I’m at my desk now, and she is laying in her chair keeping an eye on me.

The kids were so excited. They ran back to help Jesse open her Christmas presents that have been waiting since December. Sorry I have no idea what she got. It was over in 5 minutes. I did have to pull her away from everyone to change her claves and give her her shots. Once again she didn’t even scream. The kids all masked up and watched with fascination as I did what needed to be done.

Mike zonked around 10pm and the kids weren’t far behind. Mike and Chris need us home too because he hasn’t been sleeping well since we’ve been gone. It feels so good to be back on my internet. And yes, I did kiss the driveway last night. 🙂

Day 83

We all were awake by 7:30am. Landan was looking for Jesse. Mike made us a great breakfast. Then we hung out for a bit. Melinda, Emileigh, and Landan headed home around 11. Jesse wanted to be outside, and visit some family. We dropped in at Nancy and Robert’s to see them and Bella. Thanks for the cookies Nancy. Jesse loved hers (And I ate one too… broke my no chocolate for lent and I am going to itch later, but they were great!). Mike and Chris loved them too 🙂

Then we went down to see Meme and Papa. Afterwards we waved at Aunt Phyllis from the driveway. We tried to go to Bath and Body Works, but Jesse fell asleep from sitting in the truck. We did go in Bath and Body Works, but didn’t stay long.

Mike and Jesse came back to the house while Chris and I went to the store. I have been craving frozen grapes. Yum better than candy! Jesse slept for about 3 hours. She is feeling a lot better and asking for Landan.

Day 80

Yesterday went much smoother. Jesse had a school appointment, social worker appointment, and dental visit. She never left the isolation area of the hospital.

At 4:30pm, I gave her the shot of il-2 and GM-CSF. And at 9, her temperature reached 100.2. I did freak a tad, but took it an hour later. It was down to 99.5.

Day 81

I took Jesse’s temp at 8am – 100.4. Crap! Took it an hour later, 98.9. I think the il-2 shot is making her go up and down. Just praying that she is not trying to start something.

I let her clinic nurse know. But when she took Jesse’s temperature it was normal.

Jesse’s counts were good except for her red blood and potassium. The nurse practitioner and doctor opted to give her blood in preparation for a week off. They first needed to check with the research nurse about some of Jesse’s labs. The research nurse is fabulous! She moved one test up to 7:30pm tomorrow. She also called our home clinic at CHKD to see if they could draw a level and mail it back. The wonderful nurse at CHKD said no problem. Woohooo!!

The oncologist was funny. He said that we’d have to go to clinic at home twice in such “it’s going to be a bother voice.” Let’s see… go to CHKD twice… and see our nurse and oncologist that we love to pieces… hmmm so painful to have to do that (sarcasm). I can’t wait to see them! I have missed the staff at CHKD so much. They have treated us like gold, and I have never felt the level frustration there that I have here. I think the size matters too. I get the business side of things that more patients equals more money. But when you are understaffed to handle the in-follow of patients… that’s not good for anyone.

He also said that since Jesse’s counts had bottomed out she could stop the GM-CSF shot after 3 more doses. She has actually not been screaming or crying when I have given her the shots this time. And even today, when I gave her the shot, she didn’t scream. And she’s not had any Ativan today.

I honestly didn’t wait for the nurse practitioner to call the research nurse. She’s easily distracted so I took it on myself to get the ball rolling.

I checked with pharmacy about Jesse other 2 il-2 shots she’ll need at home. Since I wasn’t sure if we’d be home or at clinic on Tuesday, I called Mike’s grandparents to see if they could take the delivery. Thankfully they could. I found out later, we’ll actually be home on Tuesday. Excuse for Jesse to visit them.

The blood wasn’t ready until 2pm, but I was busy running around getting her medicines straight, paperwork we would need, talking with our clinic back home, and arranging the flight through their travel office.

When I called the travel office the lady asked if we’d been paid in full for driving out. Luckily I had opted to take half at the time. She then asked about things she could see on Jesse’s schedule. Until I got those removed she couldn’t book anything. I called clinic, and they could only see where I requested the 9am slot to be left alone.

Once they removed that I called the travel lady back. She started talking about something else. I told her that we’d been here for 81 days consecutively… Jesse needs to go home. I need to go home. And I pointed out we’d only be home for a week.

She started looking for flights, but everything was full. She asked if she could call me back. After an hour, I finally heard from her. I was getting worried we’d have to wait till Saturday. Jesse has been begging to go home for quite sometime. She even asked God this morning if she could go home. (I am asking Him to please let her not run a fever so she can go home and have a visit).

When she finally called back we had a flight leaving at 12pm from Memphis. She had managed to squeeze us onto the last two seats of a Delta flight. I am praying that Jesse isn’t running a fever tomorrow.

While waiting on the travel office, I had been after the nurse practitioner for a letter that will help us get through the airport with Jesse’s liquid medicines. Thankfully the pharmacist told me about the letter. This morning when we met with them and they released Jesse, there was no mention of this.

I also found out that we’ll have to have everything out of our room since we’ll be gone a week. I figured I should call security about my vehicle. I talked with a man who said that it was fine, and they would call me on March 16 about my car. So right now, everything is loaded in the car near the security guard house.

Jesse has labs at 7:30am and 9am. Then we’ll take a cab to the airport. We will have to return on March 16. The doctor gave me the choice of more time, but I opted to return and get Jesse started with Round 5. We have scans before she can start. I’d rather have this week, then get back, get the next two hard rounds done, and be home. I am also praying that these 2 new chemo drugs from round 3 and 4 punched her cancer hard enough to give Jesse a better chance at life.

Jesse did complain about her chest hurting tonight at her CVL location. I changed the tape, and this has improved the problem. She did have a temperature of 99.5 at 9:30pm. Praying hard that she stays well to get home and enjoy time in her natural surroundings (like the wild beast she is). I keep telling her I am going to kiss the driveway. She keeps telling me not to because I’ll get my lips dirty.

Totally over this place. I know they do wonderful things in saving people’s lives… but I am still over it. I am tired of not being heard. I am tired of it being assumed I am divorced and not working. I am tired of the internet that fails to work. I know they do a lot to help families financially, and I should be grateful and just accept that we are going to have to sit places and wait.

I am tired of the be courteous signs and the woman always saying please and thank you are magically words. Yes they are… but you need to stop directing that visitors need to be polite message at visitors and direct them at your people. You need to tell them to explain things fully instead of in halves. To be courteous of patient’s time. Yeah you work and need to be here. I have to be here to save Jesse’s life. She doesn’t want to be here and neither do I.

You also need to make your employees have to spend a month being a patient here. I’m tired of being expected to be on time, but you don’t have to be. I’m tired of being told 48 hours for this and that to then have it extended. Pick a time, and just tell me one. Don’t inflate hopes and then tap dance on them. And maybe in my head I should just start adding plus one week for anything they tell me. And plus one hour to really be seen. Tired of it. It’s rude.

The reason I am so angry is Jesse’s schedule. Yesterday the transplant doctors told us she wouldn’t be infused till around 6pm. And if it was later, we’d go on their floor, get infused, watched for 2 hours, and then we could leave.

Looked at her schedule last night, it said 12pm. Waited and looked again this morning, 12pm and 6pm. But 6pm is to be admitted. Feeling that this was a double booking, I called D clinic. They had no idea, and transferred me to B Clinic, which is the transplant clinic. The scheduler there had no idea, but said she have someone call me back.

The woman that called said they wouldn’t know the infusion time till 3 or 4 pm. Because of this we’d need to come over to the Medicine Room at 12. I tried to point out we’d be sitting in the Medicine Room for 4 hours for no reason, when we could sit at the Grizzlies House for that time in more comfort. She totally didn’t understand.

I was so hot when I got off the phone with her. And I purposely didn’t leave here until 12:05pm. At isolation check in the nurse had no idea why we were there. In fact, when she called the Medicine room, the lady couldn’t find us on the schedule. I explained to the nurse what was going on. She decided to go talk with someone.

When she returned, she had found out that we would have just been sitting in a room for 4 hours. With some back and forth between clinics, it was determined that Jesse and I would return to the Grizzlies and wait for the call to come back. I greatly appreciate her taking the initiative to find out what is going on.

As we were leaving, we got a call from D Clinic. The person apologized for the confusion. She told me that if the infusion happened before 8pm, Jesse would not be admitted. Afterwards, she would have to stay overnight. I am not happy about this either because the transplant doctor told us no matter where we were at Jesse would be able to leave after 2 hours.

So Jesse and I have returned to the Grizzlies House to wait. I wish I could go for a run to blow off this steam, but I wouldn’t have anyone to watch Jesse.

At 4:30pm, I gave Jesse her shot and medicines in preparation for the phone call about the infusion time. A nurse from the Medicine Room had called around 3:30pm saying they’d call an hour before the cells were ready.

At 5:30pm, the call finally came. Jesse and I headed to the Medicine Room. Jesse was very confused thinking that she’d have to stay overnight. And because she didn’t want to her, her blood pressure was 132/100. I got her to calm down by calling her sister and friends. She and I had been told at 12 when we came over that if Jesse had to be infused after 8pm, she’d have to sleep on the 2nd floor. Jesse doesn’t want to do this because she can’t sleep hanging onto me. She has nightmares most nights, plus when she is awake during the day she has to be touching me in some way. She’s also very paranoid about where I am. I walked to the trashcan yesterday and she started to freak that I was leaving her.

Jesse wanted a Powerade, so I went to find her some. They give you a card here that will allow you a certain amount for food. It is very generous of them. But thanks to the person who decided she was going to be inpatient that cut her food allowance. This will cause me to have to call patient services in the morning to make sure it gets changed to outpatient funds again. It is very nice of them… and frustrating at times.

At 6:50pm, the transplant team came in, pushed the cells in over 5 minutes, and left. Jesse and I hung out for another 2 hours for monitoring. And by 9pm, we were headed back to the Grizzlies. Jesse was elated to not have to sleep in the bed at the hospital. Plus the nurses in the Medicine Room treat her like gold. One had brought her a fairy coloring book.

It’s frustrating at times because you have people here who are obviously here for the job, and you have people here who want to improve lives. The people that want to improve lives talk to me as if I am an equal and treat us with respect.

Thank you Alex and Joanna for your donation to St Jude. Thank you Faye for the package of goodies. Jesse enjoyed coloring and playing with it.

Mike arrived around 7pm last night. He mentioned the plane ride from Charlotte to Memphis was like riding a roller coaster. Jesse was so excited to see him. He arrived at a good time. It was pouring freezing rain, mixed with lightening and thunder, and wind.

This morning, Mike was due at St Jude at 8:30 to begin the aphresis. Preparation takes some time, so it was about 10:30 before they started. Jesse didn’t have to be over until 10:30, and it was a very slick walk over. I did slide one time, but luckily I didn’t cause us another incident report.

We arrived at the isolation doors as a employee was coming out. Thankfully a man was coming out, who warned us it was wet and very slick right inside the door. If he not warned us, I would have been on the floor. Once we reached the phone, I called Jesse’s clinic. Busy signal. Called again, busy signal. On the fourth try, we finally got an answer. And it was 10 minutes before someone came to get us.

Because of the weather only 2 nurses had made it to work. Our doctor didn’t even come in. Due to being swamped, it was 11 before our nurse came to see us for labs. She needed 2 urine samples from Jesse plus a fecal swab. The swab was part one of two for coming out of isolation. The next one will happen next week. She got Jesse’s weight: 16k or 35.2 pounds. Yeah! Her blood pressure was unfortunately a little elevated, but they haven’t put her on medicine for that.

Jesse was supposed to see the teacher, but she didn’t appear. She was also supposed to see the dentist, but that was moved to Wednesday. It was 12:30 before we saw the nurse practitioner. I asked her for more of the aprepitant. She seemed a little confused that we even had that drug. I asked her if there was a reason that she shouldn’t take it. She told me that they usually start with 1 dose then give 2 more. Once again I am not 100% sure what she is thinking… and she doesn’t communicate with me.

She did agree to give us two more doses of the aprepitant. We decided to try the zofran in pill form. This is better for me because I can just give her the pill and not have to wait 30 minutes to disconnect anything.

The nurse practitioner also felt because she gained 0.4kg that Jesse didn’t need to stay on the IV fluids. Jesse was thrilled to have that and the diluadid taken away. I am too because now she can be more mobile. The doctor who was handling clinic for the day came into see us. I like her. Nice lady, on the ball. Had no trouble giving us the aprepitant.

We had to wait to see the transplant doctors. Our clinic nurse poked her head in the door. She said they were coming and to let her know when they left so she could get us out of there. She commented that we’d been waiting a long time. We seem to always be doing that here.

While we were waiting the pharmacist called about Jesse’s il-2. She didn’t make a lot of sense, and because the doctor didn’t come in today, I couldn’t really help her. She said they’d call me on Sunday.

At 3pm, Mike was done with his aphresis and called to see where we were. I told him we were in room 11 of D Clinic. A few minutes later, there was a cautious knock on the door and his head poked in. It was obvious that he was hurting from the aphresis from his facial expression and walk. He sat for a minute, then left to return to our room to get his flight information to see if it was leaving on time.

About 3:30, the transplant team came in. The transplant doctor was very pleased with the nausea medicines that Jesse is taking. The plan is Jesse will come to the medicine room at 6 or 7pm tomorrow. They will infuse the cells, watch her for 2 hours, and we’ll leave. They only kink is the snow and ice that fell. This might cause the cell cleaning to start later. If this happens, then Jesse will go into the a room on the Chili’s care center floor to get the infusion.

As we were leaving the clinic nurse told us the fecal swab came back clean. We don’t know about the urine yet because we didn’t collect it till about 12pm.

The schedule for tomorrow has her over at St Jude at 12pm. But they are supposed to call me. I’ll have to see how it goes. When I returned to Grizzlies, it was time to give Jesse her shot. She has been obsessing about this since last night. And I don’t know why, but this time she didn’t even scream when I gave it to her. She was as surprised as we were. I am wondering if the ativan has a lot to do with that.

For Mike, he had to leave at 5pm to catch his flight. He’d been hoping, and we had to, that his flight would be delayed. It was delayed by 30 minutes, but that didn’t happen till he got to airport. And now he is concerned that he might be stuck in Charlotte.

Jesse was crushed when Mike left. But I reminded her that we might get to go home soon. Tonight when we talked to Chris, Em, Landan, and Melinda; I joked with Jesse that when we got home I was going to hug the house, the mailbox, kiss the driveway, hug the garage… Jesse started to make a face. We asked her what the trouble was. She said that I shouldn’t hug everything because it would embarrass her. Mwah-ha ha