Yesterday was crazy with Jesse getting sprung. Medicines to get, stuff to pack, waiting on discharge papers.

The transfusion went very well. I was trying to stay awake, but at almost 12am I woke up with the nurse trying to figure out why the lead wasn’t working like she wanted. A few minutes later 4 more people were in the room: transplant nurse, transplant nurse in training, nurse on the floor, and the lab person who had the NK cells on ice.

The bone marrow nurse was grousing about the time of the transplant. The lab person explained that some doctor whom they didn’t name didn’t want 6 people to have to work on Saturday. I think the lab person was wise enough to realize how horrible that probably sounded to us because she said it a little tersely.

Jesse started screaming as they began to move her around to get to her CVL. I think awakening to 5 strange faces all peering at her in the dark was a bit much. I’d probably scream too, might even take a swing. I’ll give Jesse created that she didn’t.

The transplant nurse in training pushed the NK cells into Jesse’s red lumen. Took her 2 minutes total time. Then they were gone except for the nurse coming in every 30 minutes to check her temperature and blood pressure for 2 hours.

Thankfully Jesse did really well, and the fact she didn’t run a fever earned her release on Saturday.

At 9am on Saturday, the doctor came in. Jesse could leave. We just needed to get the IL-2 shot. Since this is a chemotherapy shot, it would take some time to make. She gave us the choice of waiting for the shot or leaving and returning for it later. Since Jesse has been having mood swings horrifically, we opted to come back.

The doctor also told us that Jesse’s ANC was 1400. This is confusing to me because she was 800 a few days ago. We go back Monday at 8:30am for labs… so we’ll see then if it has fallen.

The nurse came in and told us she’d get the discharge papers started once she finished a procedure. While we were waiting, pharmacy called to say they had the shots ready. I’ll give St Jude credit, they don’t waste time.

By 11am, we were out the door and at RMH. I left Mike and Jesse at RMH to run out to Walmart in West Memphis. I was not overly impressed driving over the Mississippi River. I had it in my head it was bigger. I will say that driving in to Arkansas was nice because there were less building and more farmland.

I returned with McDonald’s for Jesse. She was thrilled. Sadly a few hours later, it came back up. We were able to get her to eat more later. I worked on writing out Jesse’s medicine schedule so we didn’t miss anything.

In the evening she talked with Emileigh, Jimmy, Melinda, and, her sister, Chris. Landan was zonked out. 🙂 Chris misses us all, and I miss her. So does Jesse. She is amazing too because she understands we are all apart because of the cancer.

Jesse did cry some yesterday about Mike leaving to go home, and this morning was really hard. She and he bawled when the shuttle arrived to take him to the airport. We had talked about us taking him, but the concern over Jesse’s nausea and riding for 30 minutes each way might be too much.

After Mike left, Jesse told me she hated that I brought her here. And asked why couldn’t we have stayed in Virginia. I can’t get her to understand that this was the best option we felt we have for her long term survival. And yes I did look at her and tell her she would die if we didn’t come here.

She had experienced some nausea this afternoon, but luckily the medicines have helped to keep down the food she has eaten so far. And she even held perfectly still for me to give her 2 shots this afternoon: IL-2 and GM-CSF. Tomorrow I will only have to give her the GM-CSF. I am sure the residents at RMH love 4pm around here when Jesse screams because of the shot.

Tomorrow we just have labs and visit with D clinic. I have a feeling that Jesse might need platelets. We’ll see 🙂

Last night Jesse had a rough night. The nurses had been coming in every 2 hours to get her to go to the bathroom. But last night they did not. And even though they didn’t Jesse was up every 2 hours going.

At 1:55am the fire alarm woke Mike and I up. I think it was the one time that Jesse slept. The fire department came, and we could hear people running around in the hall talking on radios looking for the fire. Plus they were slamming the doors that normally stay open, but when the alarm sounds swing shut.

Made me think of the Shamrock in 2012 where some guy pulled the fire alarm in the hotel. Except we hadn’t even made it in yet 🙂 Then that made me remember I need to see if they will defer my entry this year to next year along with Chris and Jesse’s. There is no way I can leave St Jude to go run a race. The guilt would be too great.

We all slept till 8am. Mike lifted Jesse out of the bed to use the bathroom. He put her back when she was done, and that caused a significant meltdown. Her stomach hurts this morning, and I am not sure it that contributes to the melt downs.

Mike told her that she was going to stay right there in the bed till she calmed down. This was effective in getting her to stop with the freak out.

The nurse brought her medicines. And she told us that several country music stars would be visiting St Jude today. Jesse is hoping Keith Urban is will them. They are very hush, hush about who is coming. But Jesse is on a list for someone to stop by and visit her later. This should be interesting depending on the mood they catch her in. Mike thinks the person that donated the blood she got yesterday is bipolar.

At this moment the rumor is still for Jesse to get the NK cells tonight at 12 or 12:30am. They will hook her up with leads to see how she does for 2 hours after getting them. Even heard the rumor that some kids get the cells in the medicine room during rounds 4 and 6. Hard to believe that we have been through 2 rounds of treatment all in 33 days.

The other rumor is that in 2.5 weeks, Jesse will have the scans done again to see if this is working. I really hope so considering that she was dancing last night, but this is cancer and everything changes in the blink of an eye.

If the IL-2 shot tonight doesn’t cause her to have a fever, we might get to RMH tomorrow. Yeah! Mike will have a chance to see it before he heads home on Sunday. I am praying that happens.

The psychologist stopped by 2 minutes before we were to face time with Jesse’s class. We explained the situation to her, and she agreed to catch up with us next week.

This afternoon Jesse got to Face Time with her class again. This really lifted Jesse spirits to see all the kids and teachers. I am hoping that next time we can do that, we have a better connection on our end.

After we finished talking to them, everyone hit the door in the Friday afternoon check in rush. First it was the nurse practitioner to see Jesse and check on what medicines she needed in order to be discharged tomorrow (hopefully).

Then the Ethel Research nurse showed up at the same time. She spoke quickly and then was gone. About 30 minutes later her main oncologist stopped by talking about seeing Jesse in clinic and tonights transfusion.

In the middle of this, Progressive called to let me know that my car won’t be ready until Monday (think he forgot it’s a holiday… so Tuesday).

Then 4 doctors/ nurses/ physician assistants stopped by. Too many people. And Jesse was feeling the overwhelm too. The plan is still midnight-ish. Then 2 hours with the heart monitor to make sure that Jesse doesn’t have trouble.

After that the social worker stopped by. She spoke briefly because Jesse was talking about going to get the mail. Thank you Reba and Gabby for your cards. Jesse enjoyed them. Thank you Madison and Lori for the pjs for Jesse and her American Girl Doll. Jesse was very excited they are purple. Thank you kindergarten teachers and assistants (and anyone else who particpated and isn’t involved with the Kindergarten classes) for the very generous American Girl doll you sent. You guys are amazing.

About 4:30, we changed Jesse’s CVL dressing. She pitched a fit at first, but we were able to get her to stay still so we could get it done.

Around 5pm, Jesse finally felt like eating. We went down to the cafe to get her some cereal. As she was eating it, the attending, fellow, and follower (don’t think he is a resident… not sure what he is) came by. I know they are all jovial, and most of the time I try to be, but all day with a happy one minute, bawling the next child frays your nerves.

They are pleased with how she looks. And plan to return early in the morning to potentially discharge her.

At 6:15pm, Jesse got the IL-s shot. She was not pleased with the time I chose and asked for the shots to be at 11am instead. So tomorrow we’ll give her the GM-CSF at 11am. This will make Monday, Wednesday, Friday interesting as Jesse will finish with school in time to get her shot. Wonder if she’ll be able to concentrate during that time. Sigh

Mike was able to start laundry finally. Our neighbor put her clothes in the laundry last night, and I guess forgot about them.

Afterwards she got to talk with Emiliegh, Landan, Melinda, and Chris. Emiliegh and Chris read Jesse a story. They did a great job. 🙂 Maggie was confused. She could hear our voices, but couldn’t figure out where we were.

As for the country musicians the rumor is that they will come around tomorrow sometime. If Jesse is discharged, I don’t really think waiting around for them to appear will be a good idea for her. She is having too many melt downs and too much negativity.

She spent an hour this afternoon freaking out because Mike is leaving on Sunday. Tonight she was really nasty to her nurse to the point we aren’t allowing her to watch TV and I had her in the bed. Mike let her out to cuddle with her.

Basically I am staying awake to see how the transfusion goes. I am hoping that Jesse will be asleep, but she is wide awake right now. She is complaining of pain where her shot occurred. She asked for an ice pack, but is still talking about it hurting. We asked her if she wanted oxycodone, but Jesse has refused. She has had no pain medicine since the end of the antibody. It is amazing how much better diluadad worked for her once we could get the doctors to listen to us to make the change.

She is coughing some tonight. I am praying that is not a bad sign as her ANC was 800 yesterday and will probably reach 0 today or tomorrow. And the transplant team asked if she had a cough. At that time she didn’t… the cough has started in the last 15 minutes.

Jesse’s last day of chemo and antibody for round 2 started today at 9am. So far we have gone without a hitch.

Before the chemo started and while Jesse was still snoozing the nurse practitioner on the floor this week stopped by. She is going to come back when Jesse is awake.

At the same time the body shop called about my car. They sent a guy to pickup the vehicle with a tow truck. I called the gate to let them know he was coming. The driver ended up at a different gate and got very confused. We finally got him straightened out, and rumor is my car will be fixed by tomorrow.

Then the nurses were in and out getting rates checked and rechecked. Then I think the most annoying volunteer to date stopped by. I know that she is doing good and helping out mankind, but talking in baby talk makes me want to do things that will cause me to end up in a jail cell. They come through and disrupt everything in their quest to “do good” and make their “hearts happy.”

I left while she was here because her voice was like nails on a chalkboard. I went to check on Mike. He started the process for donation of NK cells at 9:30. When I went down to see him at 10:15, they were still trying to get the line in him. He was taking it really well. And by 10:30am, the line was in one side.

I returned with coffee for Jesse as the volunteers were finishing up. I am sure they commented on how unfriendly I was in not opening up to them about everything Jesse has been through. I just wasn’t feeling like the baby talk in the whiny voice.

The nurse practitioner returned to listen to Jesse while she was awake. Then the nurse came back to check on Jesse because of the antibody. Jesse has been fairly whiny today. I know she might feel more tired because her hemoglobin is at 7.2.

We also pinpointed when the NK cells would be transfused. Rumor there is Saturday morning at 12:30am.

I need to get out of this funk I am in. I did workout this morning, but I still feel this uber frustration with being here. I so want to be at home, but this is where we need to be for Jesse. And I am stuffing it down so that Jesse doesn’t become more whiny and upset than she already is.

As the afternoon progressed, Jesse complained more of her leg, back of neck, and stomach hurting. We gave her ativan because we were saving the Benedryl for her blood transfusion. A little before 3pm, we gave her the Benedryl and Tylenol to transfuse the blood. Even after all that Jesse complained about her stomach. She has stopped complaining about the pain.

At 4pm she was able to get Zofran. At the same time she started to get the zofran, we were opening packages. She saw Peppermint Patties in the box and instantly wanted one even though complaining her stomach still hurt. And when I would let her have it, the water works began. She still didn’t get one. I wanted the zofran to get a chance to work.

A little after 4pm, Mike returned. He was a little woozy from the aphresis. I had checked on him through the day, and his re-entry vein had caused them to slow down the process. I was still impressed that it was done within 8 hours.

I left to get Mike and Jesse food. Jesse ate 3/4 of a cheeseburger, 1/2 a thing of fries, pretzels, and cheese-its. I am holding my breath that that will all stay down. Right now she is singing and playing on the couch in the room. Think that she got Java/ bottomless pit blood tonight. She does need to gain some weight because she weighs about 34.32 lbs today.

Tomorrow starts shot anxiety for Jesse. Because of potentially being out of here while undergoing several of the shots, I have asked that we start them at 6pm tomorrow night. We talked about doing it in the morning, but I was concerned about waking her up with that.

Tonight a volunteer stopped by to relieve Mike and/ or I, but we figured Jesse might not go for that. Plus she has been out of bed making Mike nervous because she wants to walk around. Then the happy cart stopped by leaving Jesse with a Polly Pocket. I think that whomever donated blood that Jesse got ate a ton of sugar and drank coffee like a champ.

Thank you Evelyn, Kathy, and Malakai for the food, coloring books, books, and pencils. Thank you Andrew, Addie, Aubrey, Avery, and Joy for the hat. Thank you Tommy, Debbie, and gang for the Hello Kitty coloring book and doll. Thank you Deb and Dale for the Tinker Bell book, book, and cards. Thank you Mrs Ro, Mrs Patty, NC family (and the for the McD’s gift card too), Cindy, Mike, and Biscuit for the cards.

I slept later than I had meant to this morning. And I have discovered that if I want a workout and shower, I must be up by 6am. Because by 8am, I can just forget it. Good thing I shaved my head. No greasy hair and no bed head.

I am so over the in and out of people and nurses and doctors and volunteers. And from the look Jesse keeps cutting people, I think she is over it too.

I am also over the crappiness of this internet and my inability to connect without being kicked off after about 10 to 15 minutes. Occasionally I get 30 minutes. This is not helping my stress level because I have several things I need to get done for work.

Before 9am, a nurse and nurse in training came in to start the cyclo chemo. First they gave her zofran to help with nausea. Also got her weight 15.9 kilograms (1kg = 2.2lbs -> ~35lbs). Then they put on the cyclo. This ran for 30 minutes. While this was running, they were giving Jesse her medicine and removing her nephrostomy tube bandages. The spots look to be healing well.

By the time this was all done, it was time for the topetecan. Just as she got ready to put in on the pole, the needle in the syringe fell out. Luckily no medicine fell out. But this delayed everything by 45 minutes while we waited for pharmacy to refill the chemo.

While we were waiting, the Ethel research nurse stopped by. The nurse practitioner stopped by while Jesse was using the bathroom. I was trying to do situps when they stopped by.

Jesse was a tad unfriendly to all of them. I think I explained to the Ethel nurse that we’d had so many people in and out of the room that Jesse was over it. I am over it too. I am tired of people coming in the room and do the sappy sick sweet voice to Jesse. Talk to her normally please. And the guy that came whistling down the hall… well I am not being nice.

The antibody started about 11:30. The nurse in training came in, asked Jesse if she hurt anywhere, and for the first time today, Jesse tells her her neck hurts at a level 10. Bull hockey. If she was crying and not wanting to drink coffee, I would believe the level 10. I called Jesse on it. She claims that she is at an 8. I don’t believe that either. We got her laid in the bed.

The nurse got her an ice pack. Jesse started giving her trouble about where to place the ice pack. I looked right at Jesse: “You are not broke. Fix it where you want it yourself.” The nurse looked at me shocked. I am so tired of people babying her. They do not do me any favors. And they definitely don’t do her any favors.

After the nurse left, I had a talk with Jesse about her behavior today. I am over the whining and grouchiness. I feel grouchy too, but I am stuffing it down to do what needs to be done.

The 3 doctors stopped by to see how she was doing. She mentioned to them about her neck. They suggested to her to hit her button.

The room service lady brought Jesse a banana. She ate that down really quick. And now she is eating pretzels. I do think she has pain, but I think it’s maybe a 4. When her dad returned from the doctor checkup, Jesse put on her pouty face for him.

He got her an new ice pack for her neck before he left.

The cleaning lady came in next. I like her. She has her teeth so you can understand what she is saying. And she doesn’t smell funky. There is a lady that cleans for her on her days off that I can’t understand her and I am not sure what is mentally going on. I do know she hates my guts because I called her out for using water and mop in Jesse’s room when she was neutropenic. After she left, the room smelt like dead fish.

The nurse in training returned with new bandages for Jesse’s back. Jesse attempted to give her trouble over removing the band-aids. At the same time, the nurse practitioner returned to listen to her. All while I was on a webinar for work. I love how all these people have to show up when I am trying to work. And give me nasty looks because I am working. Excuse me for not sitting around on my butt.

Mike has gone to take my car to the body shop from where it was hit a few Sundays ago in the parking lot here. I really hope the insurance company isn’t going to give us crap. The woman on the phone yesterday for Progressive treated me like I was a first rate moron. I did call her back and leave a slightly nasty message. Like I have time to make crap up.

They are giving us a rental car to drive. We’ll see how this goes in getting that set up. Turns out that Enterprise didn’t have a car till later in the afternoon. After Mike returned here with my car, they called saying that they had a car. Then asked him to drive 35 minutes back to meet them. Mike got a little peeved. After finally working things out, Enterprise brought the car here. The body shop is coming in the morning to pick up my car.

A volunteer stopped by with the most annoying knock ever. Then child life came by. I guess everyone stopping by does make the day go by quicker, but you definitely don’t get any rest.

Jesse was feeling pretty punk this afternoon. Even complained that her leg was hurting. She asked me to go get the mail. The packages really perked up her up today.

Thank you Greenwood Christian Academy for the cards and stickers. Thank you Bright Beginnings for food, wands, and stuffed animals. Thank you Briar Rose and family for the stuffed animal, socks, purse, chap stick, princess, hair band, and books. Thank you Myron, Anne, Ella, and Ellis for the movie and coloring books.

Tomorrow Mike undergoes aphresis to get the natural killer cells for Jesse. I am not sure when they will put them in yet. I am hoping tomorrow they will let us know. And maybe if Jesse doesn’t run any fevers, we can stay at RMH.

I have spent most of the day fighting with my internet access in between all the important things that I should be doing instead. Crossing my fingers that maybe, just maybe I have it fixed tonight. And I don’t. I keep seeing a great signal, but the internet connection from my computer says limited access and no network.

No sign of a resident this morning. Woo-hoo!!

At 9am, chemo started. By 10 am Jesse was on the antibody. Instead of morphine, Jesse got dilauded. What a difference. She didn’t have to push the button until the last hour of the treatment. And even then, Jesse wasn’t in as much pain as yesterday.

The doctors were blown away when they all stopped by to see her. And Jesse stayed awake the entire time. She has played with play dough, gone to the mail room, and eaten today. Only once did she complain of an upset stomach. She even got to talk with her sister and friends by face time tonight.

Mike had visits with the donation clinic and EKG today. Then he took my car to be fixed. Turns out the battery in the car was the wrong battery. So glad that was an easy fix.

Thank you Allison for the books. Thank you Mike, Gina, Lindsay, and Ashley for the books, crayons, coloring books, ponies. Thank you Mike, Cindy, and Biscuit for the treats. 🙂

Thank you Mrs Doherty’s class for the snow flakes and snowmen. Thank you Mom for the dolls, books, and cookies. Thank you Pete and Melinda for the card. Thank you Jackson family for the bear and scarf.

Thank you Betty for the card and money. Thank you Irene, Dr. Coffield, Aunt Carolyn and Uncle Jerry, Ray and Linda, Jim and Terri, and Bob and Gerry for the cards.

Thank you Calvin and Caleb for the wand and notes. Jesse was really excited to get a note from a classmate.

Thank you Henry for your drawing. Jesse loved it. 🙂

Thank you Hooker family for your cards from your church and the package.

I apologize if I have missed anything. Jesse beats me to opening things… and sometimes I don’t get a chance to see everything in the packages before they are strewn all over the place as she plays with them.

Today Jesse started round 2 of the antibody. At 9am, the nurses started the chemo. By 10am, she was starting her antibody. Within 30 minutes Jesse was complaining of neck pain. We upped her morphine, but this did very little for the pain.

Over the next four hours, the nurses and I bounced different pain medicine ideas back and forth. I asked about giving her oxycodone or a longer acting pain medicine instead of the fast acting instantaneous pain medicines.

As the antibody wound down, Jesse became more itchy. The morphine has this effect on her. Between the morphine and the Benedryl we gave her for nausea and itching, we have snowed her :(. I just woke her up to pee, and she is falling back asleep. They want her to pee every 2 hours with chemo, and it had been almost 8. Morphine can effect the bladder too.

Tomorrow we’ll try the dilaudid to see if that works better. Overnight we’ll give her the oxycodone and neuronton. And hopefully this will help with her pain. The morphine just seems to give her the side effects and no help.

While the antibody was going on, the nutritionist dropped by. I can’t stand a nutritionist. I know they serve a vital function, but I just feel so aggravated with the food pushing. And yes I know she needs to eat, but how can one eat when they are being pumped full of drugs that mess with every aspect of your body.

The nurse practitioner on the floor stopped by to look at her. After awhile the doctor stopped by.

Mike asked about all the people coming in and out this morning. My description of it to him, made me think of the book “Lady with the Alligator Purse”.

My version:

“In came the nurse. In came the nutritionist. In came the nurse practitioner. In came the resident. In came the fellow. In came the attending doctor. In came the main doctor. In came the child life specialist. In came the psychologist. In came the optometrist. The only person who hasn’t stopped by is the lady with the alligator purse. And oh how I wish a slice of pizza was the fix for all of this.”

Re-reading this before I post it tonight, and I sound just over it. I am over it. Undergoing the antibody is not easy. And with the chemo kicking in, Jesse is miserable. Plus my computer and the internet here have not been getting along today.

Tonight Mike rode in the elevator with Jesse’s main oncologist. He told Mike how pleased he is with the tumor’s response, but to keep praying that the treatment works.

As for Mike, today he went to B clinic to donate the blood they need to test. He mentioned they took between 12 and 15 vials of blood today. Then he had an x-ray. Tomorrow he’ll have an EKG. Thursday is now the day for the aphresis. And rumor is they will put the natural killer cells in Jesse at 12:30am Saturday morning.

The internet at the RMH bites and the one here is acting up with my computer :(. For some reason it blocks my access to Jesse’s site. I do have a hot spot, but Friday it decided not to work. I miss my iphone horribly. And Saturday, we were running around so I didn’t even turn on my computer.

Friday morning, Jesse got to sleep in. I was up to giver her a dose of merapenum through her CVL. I really like those eclipse balls for infusions. They are really cool.

At 11, we went out to try the car with fingers crossed. Thanks to the Alaskan redneck the car started. (and I mean that with no disrespect at all. Renecks are very innovative people who work with what they have… and I think if he wasn’t in a company truck, he’d have had a beer can 🙂 )

Jesse and I first met with her nurse practitioner to get her medicines set for going inpatient. then I called the Ethel study research nurse to get the Ethel medicine. I had to leave a message.

Since we were an hour early for our appointment with the line nurse, we went to C Clinic to wait. Lukily she took us early. Super nice line nurse.

In order to get the sterile supplies for Jesse’s line and clave changes, I had to clear with the line nurse. And to clear, I had to basically do the changes with her supervising. The newest part for me was the betadine because of Jesse’s allergy to cloroprep. Thankfully the line nurse was very impressed with how I did and what I remembered. And sadly doing the dressing and cap change was like falling off a horse. It is a horse I wish I never had to get on again, but I will do what needs to be done to keep Jesse alive and well.

After seeing the line nurse, we had a wait to see the optometrist. He gave Jesse a prescription for +3.5 glasses. I don’t fully understand what this means vision wise, but I do know that her eyes have stayed dilated from the antibody.

St Jude doesn’t make glasses on site (bummer), and the last appointment the place that does had was 5 minutes from when he handed the prescription to us. The optometrist releazed this and suggested getting reading glasses to cover until we could get to the place.

I still had not heard from the Ethel Study research nurse. So I called the research doctor. Turns out the medicine was ready Thursday, but not ready when we picked up Jesse’s other prescription. Yeah. So we went to pharmacy and got the prescription.

At this time Jesse was bawling because I wouldn’t take her to McDonald’s. She had been rude to the optometrist and attempting to channel a diva. I am not interested in that behavior.

We then went to patient services to get the mail and supplies we needed for home.

We arrived back in time to give Jesse her next dose of merapenum. When that was completed, I put the ethanol/placebo in her lines to sit for 2 hours. Then we ran out to Kroger.

The Kroger closest to us was more crowded than our Walmart at home has ever been. I think we are going to try to find a different one in the future because it was filthy in there too. It took us an hour and 15 minutes to get the few things we needed.

We got back to RMH just in time to take the ethanol/placebo out. Afterwords I cooked dinner for us. It felt so good to cook. Jesse ate really well and wanted to keep grazing. Around midnight she was finally full.

On Saturday morning, I started cleaning the room and packing while Jesse slept. She awoke around 10am wanting bacon. After eating, Jesse and I finished cleaning the room and headed off to find Target and a place to cut my hair.

Across from the Target, we found the Plaza Beauty School. I remember years ago my aunt had a beauty school nearby that she always went to have her hair cut. The people inside were more than happy to shave my hair off, and even let Jesse help. She got the biggest kick out of this. When the hair cut was done, the lady who did it wouldn’t take a tip and the instructor wouldn’t let me pay for it.

The instructor fell in love with Jesse and made her feel really good about her how she looks right now. Which I think Jesse looks too cute with no hair and now glasses.

We returned to RMH in time for dinner. Laurie King Ministries made dinner. It was fantastic. After that it was time to go watch the Harlem Globetrotters. RMH provided the tickets and had 5 limos for us to ride in. Two families with kids fighting leukima were super nice to take Jesse and I under their wings to make sure we got back to RMH.

I am not sure what Jesse thought about the game. She talked to me last night about the fact the team in black played the right way and the Globetrotters played funny.

Once we got back to RMH, Jesse and I grabbed our stuff and headed over to St Jude. At 10:30pm, we were situated in our room. I think Jesse caught a second wind because it was 2am before she went to sleep.

Today at 9am they started the chemo. By 10am, she was done with chemo for the day. Right now we are hanging out waiting to see if Jesse needs blood. She has been eating fiercely today. Mike is now here to get ready for Friday when he will donate the natural killer cells to Jesse. Chris is at home.

I am really sorry that Chris couldn’t come this time. Mike told me when he told her that she became very upset, even threw things in the house. She told him that she just wanted her family back together. I have worried about her as much as I have worried about Jesse. I worry about the long term fall out for her. Hopefully we have taken the right steps to help her work through the frustration of it all.

Thank you Abby for your package and card. Jesse was so excited with your card that she had me pack it to bring to the hospital. She also talked about seeing you on the playground.

Thank you Jon and Courtney for the coloring books and Itunes card. Thank you Sandy for the books. I remember reading about Mike Mulligan and his steam shovel. Jesse has enjoyed the book and was so upset at how mean they were to Mary Ann.

Thank you Daphne, NC family, and Meme and Papa for your cards.

Jesse is already planning her trip to the mail room. And the room we are in this time is closer to the elevators. 🙂

Thank you everyone for the positive thoughts and prayers. 🙂

Since the car was dead and I realized I didn’t have flushes to do Jesse’s antibiotic, Jesse and I were on the shuttle by 7am. We didn’t really have to be at sedation in Chili’s Care Center until 7:45, but I needed to get that antibiotic started. It is given every 8 hours. By 7:22am, I had her started on it.

Jesse was exhausted of course and in pain from the bone marrow biopsies. We went back for the pre-op sedation appointment. Around 8:30, the surgery doctor arrived. He mentioned that in removing her tubes from her kidneys, they could hit the stents. If they hit the stents, then the surgery would be longer and more complicated.

I appreciate the warning, but on the other hand… I could do without the warning.

While I waited on Jesse, I went to D Clinic to get the flushes I needed and try to get the sterile clave (cap) change kits and dressing change kits. Our nurse was really nice, but told me that I will have to be checked off on being able to do those things. Yeah a meeting with the line nurses, but the refresher will be good.

They called at 9:45am to say she was in sedation and when she awoke I could come in. I moved to outside the Diagnostic Imaging Recovery door. About 10:15, I heard Jesse yell, and shortly after I was admitted.

Jesse was not complaining about the tube removal. Instead she was complaining that her front hip hurt right where the bone marrow was taken. This is the first time I have seen them done in the front. I understand they had to because of her nephrostomy tubes in the back.

When we left, I gave her an oxycodone. Jesse and I went to the “covered porch” to wait for her 12pm labs. A little before 12pm, Jesse was called back. She had been sleeping the entire time.

The triage nurse asked about her pain level. At the beginning of drawing the labs, Jesse was out of it. But at the end, she totally came around. She was even sitting up cross legged! The nurse told me that pain medication taken by mouth can take 45 minutes to an hour to make a person feel better. IV pain medicine works in 15 minutes. This makes sense since IV meds don’t have to travel through the GI tract to get to the blood.

Jesse actually said she wanted pizza for lunch. But when she took a bit she complained she could taste it in a refluxy way.

We headed to D Clinic to await our appointment with her oncologist and learn the fate of this first round of chemo.

He was in a great mood… and the news is promising. The spot in her shoulder and the ones in her hips aren’t showing up in the MIBG. (Mike remembers our home oncologist mentioning that she had lymph nodes in that area showing trouble. I missed that). He also said the original tumor was looking less bright. He had said 3 almost 4 weeks ago that was really bright on the MIBG.

The bone marrow biopsies are still being read. The initial reading looks clear. But it will be a few more days before we get the definitive reading. The first bone marrow biopsies here had clumps in the sample. They could tell me immediately it was in Jesse’s bone marrow.

Even though this is all good news, Jesse is not out of the woods yet. We are praying that the 6 rounds in total will be enough to keep her alive to grow up.

For Jesse the most pressing question was: “What is my ANC?” and “Please no shot!” She got her wish 🙂 With an ANC of 3700, Jesse gets a week break from the GM-CSF shots. They did want a urine sample, but agreed to let us bring it over tomorrow when we come. It was 2pm by then, and Jesse was done.

As we left clinic the plan was to return on Monday for labs to get ready for admission Tuesday night at 8pm. This second round will be 5 days of cyclophosmoride and topetecan with one day off followed by the 5ml infusion of Natural Killer cells from either Mike or I. I asked the nurse practitioner about what to expect. She said the infusion of Natural Killer cells is really a non-event. If Jesse’s counts bottom out or she does run a fever we will stay inpatient longer than 8 days.

We waited on the shuttle for 20 minutes before cramming on there to get back to RMH. When we got back, I called AAA to see about getting my car running again.

As I was taking Jesse’s second dose of antibiotic off, her oncologist called. Instead of waiting until Tuesday to start the chemo, Jesse will be admitted Saturday night after the Harlem Globe Troters game (about 10pm). She will start chemo on Sunday. He wants to do this this way because of coordinating blood tests on me or Mike for the Natural Killer cells and when they can do the aphresis. Friday looks to be the day right now.

As he was telling me this, the AAA guy was calling to ask where RMH is located. Somehow I was kind of able to help him get here. He was able to get my car started, but told me the terminal to the battery post needs to be replaced because it’s too loose. He rigged it for now. He offered to return on his time to wrap the post on the battery using a beer can.

I appreciate his offer, but I know Mike. He would rather find a garage here and have the terminal replaced. And I agree that would be a better long term solution.

He suggested that Jesse and I drive the car for 30 minutes. Jesse and I hopped on 40 East, then ended up on 240 heading to Jackson, Mississippi, then got off somewhere North of St Jude (don’t ask me how we did that one). Jesse wanted McDonald’s. We found one, and she ate all 4 nuggets.

We returned to RMH about 5:45pm. Jesse has been talking my head off tonight and eating a bunch. Hopefully this will make the nutritionist happy with the weight gain. Now she is trying to read to me, but with her eyes staying dilated… she can’t see.

Tomorrow Jesse has an eye appointment. Really excited to get the ball rolling for her glasses. She can’t decide if she wants purple frames or blue ones… we’ll see what they have. She is also excited to go to school here, but I am not sure when that will happen now. I know they’ll come see her inpatient. Tonight she is mentioning that her right leg hurts at the hip and in her leg at the same spot she complained about before. I really hope the infection isn’t trying to come back 🙁

Thank you Norge Elementary for Jesse’s ballons. She was really excited to pick them up and that they were taller than her 🙂 I told her to hang onto them and they could carry her to her room on the second floor. That one got me the glare 🙂 She has gained back some weight – on Wednesday she was 15.6 kilograms. Today she is 16 kilograms.

Sorry yesterday went berserk really quickly and by the time I knew it, it was 1am CT the next day.

Jesse and I both were up at 5:30am for some reason. I think her need to go to the bathroom helped her be up. That’s fine with me, at least she is going 🙂 And it motivated me to get up and get laundry done.

The Echo/EKG technician stopped by around 8:30am. Really nice guy and I appreciate him coming to us.

After that the discharge nurse stopped by to teach me how to give Jesse her meropenum (sp?) antibiotic through her CVL. The antibiotic is put in a little pressurized ball. Once hooked to the CVL and the 2 clamps are undone, it infuses over 30 minutes. Jesse hates it. I think she views it as something else tying her down. Can’t say I blame her there.

At 12:15am it was time to head to Nuke Med for the MIBG and bone marrow biopsy. Jesse was really upset when we told her they would be putting her to sleep. With the bone marrow biopsy being painful, we felt this was the best option.

As Jesse slept, I loaded the car. On the second trip I realized I forgot my keys. Luckily I’d left the back hatch unlocked. If only I had known then, what I found out later…

Jesse was finally done around 5. We returned to the room to get her GM-CSF and another dose of antibiotic. Plus we needed to start the ethanol in her lines to sit for 2 hours. Jesse’s ANC was at 1300, not high enough yet to stop the shot.

While the antibiotic finished running, I ran down to return the parent room key. A dad that has been here with his daughter stopped me to talk. Their daughter is 4 year old and fighting a tumor in the muscle in her abdomen for the first time. They have given them a good prognosis. I felt bad that I was in a rush to get everything together when I excused myself. I think he is an extrovert, which being here is probably very hard.

At 6pm, we were finally ready to leave. Got in the car… battery dead. Ah suburban how I miss thee (not the gas mileage part though). Jesse and I returned to the hospital to see if we could get a jump. At almost 7, the security guard could help us. Poor guy had been jumping cars for 2 hours.

He hooked the box up to my car, I turned the key, and horns and lights start going off. This went on for 2 minutes, then stopped. I opened Jesse’s door to buckle her – horns and lights again.

After looking in the manual, we learned that we need to unlock the driver door with the key first because of the security system. I really appreciate that guy staying to make sure that we were able to drive to RMH (Ronald McDonald House).

He told me that I needed to drive the car for 30 minutes to really recharge the battery. Unfortunately I can’t do that. Jesse was done. There was no way I could make her sit in the car for 30 minutes. Plus it was sleeting. He agreed with me. He also told me that he was a former Marine that trained in Virginia. I’m glad he is working here now.

Jesse and I got over to RMH about 7:30pm. I took her up to the room. Then I got a load in. On the next load Jesse wanted to go with me. After that load, we got everything situated in the room. RMH left Jesse a bag of toys for Christmas. She enjoyed looking through them.

At 7:50pm, it was time to take the ethanol out. I still had to give her a dose of meropenum at 11:30pm. This gave me a chance to sort of catch up on my work.

After we were cleaned up, Jesse and I went to check out the rest of RMH. It is a really nice place. I had Jesse on my shoulders going down the stairs. She freaked… don’t think that child likes heights at all.

I am having trouble connecting to Jesse’s site through their internet connection. I did fight with it a little last night, but decided I needed to get some sleep. It was hard to fall asleep. After 3 weeks, I have gotten use to the hum of activity in the hospital.

Right now I am waiting on Recovery to call so I can take her to have her blood drawn and then to clinic for news about the MIBG. I am not really sure I want to hear it. Believe me I am praying for good news for Jesse, but I don’t want to get my expectations to high. Plus I was waiting in clinic when her main oncologist walked out with a new resident or someone and asked him after he turned the corner what he knew about neuroblastoma.

We woke up to the news this morning that Jesse’s ANC was at 700. Woo-hoo! Now we need to get to 2000 to stop the GM-CSF shot. When we stop that shot, it might cause her ANC to drop again, but that will give her a little break between rounds.

The judgmental resident was back this morning. Some residents need to have a simulated child and have to stay in a hospital room with that child. Or have to be “sick” themselves and stay in hospital room for a week or longer. They really, really need to gain some empathy and understanding for what patients and families are dealing with.

This resident and I got off to a bad start on Saturday when she judged me for being asleep at 8am when she came in. The night before Jesse was feeling better and stayed awake. Sunday she woke me at 8am, when Jesse and I had been up late the night before again. Monday I was waiting for her. I wish I could have snapped the surprise look on her face that I wasn’t as lazy as she though I was for being asleep at 8am.

I asked her about Jesse’s optometry visit. She told me that we could have gone downstairs when the platelets were running yesterday. And kind of acted like “Why didn’t you?” Well we didn’t because when you are getting blood products, you may not leave the floor. Eye clinic is on the first floor.

I decided then that she was not going to be helpful.

After she left, the nurse came in to let us know we’d be heading downstairs to Interventional Radiology at 9:15am. Jesse slept until that time. When she woke she complained of a spot hurting on her head. This is the 3rd morning she has complained about it. Once she is up and going, the pain disappears. We aren’t sure what is going on.

At Interventional Radiology, we went through the pre-surgery processing of seeing the anesthesiologist and his team mate,the operating doctor, the nurses, getting vitals, and heading to the surgery room. I had not wanted to ask how long it would take with Jesse awake. When I asked one of the nurses started pulling on my scrubs to get me out of the room. She rushed me to get undressed and out to the lobby. I told her I knew where to go. And I wasn’t going to run back into the room and put Jesse at harm.

After an hour, I hadn’t heard from them. Finally after an hour and fifteen minutes a nurse called. She said the stents went in easily. The nephrostomy tubes were left in place in case the stents failed. The bags have been removed. The plan at that time was to put some contrast in Jesse, watch it exit her body to make sure the stents worked, and remove the tubes from her back tomorrow.

At the time they told me this I thought she was getting the MIBG injection tomorrow for an MIBG scan on Thursday. The interventional radiology nurse talked with Nuclear Medicine about doing this at the same time Jesse comes for the injection.

Around 12:30pm I was finally able to see Jesse in recovery. The nurse in recovery told me that Jesse needed the MIBG injection today. The doctors have moved her MIBG up to tomorrow at 12:45pm. I felt a tad freaked out because I had not given her any SSKI drops. At home, we give her the drops starting the day she gets the injection. Here they wanted her to start taking them the day before the injection.

So Jesse and I changed courses and returned to the floor to get her SSKI drops. When we arrived it was also time for Jesse’s GM-CSF shot. Jesse missed her dose of oxycodone this morning and was bitterly complaining about pain in her left leg. For the first time, the nurse gave her the shot in the right leg. After screaming, Jesse put on her own band-aid.

The Nuclear Medicine technician arrived around 2pm to inject the radioactive isotope. While he was here, the interventional radiology nurse stopped by to see if she had peed. Jesse had not yet.

Her nurse practitioner from clinic came to see us afterwards. I talked with her about Jesse’s eyes. She told me that she’d make sure the appointment for Jesse’s eyes was scheduled. (And she has kept true to her word: Friday). She also told me that she was trying to schedule a bone marrow biopsy for Jesse. Praying that by some awesome miracle that comes back clear!! (Might be setting my expectations too high)

She also mentioned that we might be discharged tomorrow. We’ll see of that rumor really happens…

Jesse needed to use the bathroom at the same time the attending and her fellow stopped by. They agreed to come back later.

Just as Jesse finished the interventional radiology nurse called. Due to the MIBG injection being urinated out, they couldn’t do their contrast test at the same time. They will do it on Thursday. And the bone marrow biopsy will happen with the MIBG scan tomorrow. It does bit she’ll be put to sleep basically 3 days in a row, but this is what we need to do. I am really glad she called.

We waited for her to come back. By 4pm, I didn’t want to keep Jesse from checking the mail. I asked her nurse if it was okay to run down to the mail room. I also talked with her about Jesse’s pain in the left leg. She talked with the team, and they approved another 1/2 pill of oxycodone for her. This seems to have worked in getting her pain back under control.

The judgmental resident came in to ask what we needed for discharge. Since this is our first discharge we need all the medicines she is taking. We need dressing change kits; we need basically everything. I wasn’t overly nice to her, but I was firm because I am just tired of her attitude. More than likely she’ll screw up discharge impressively tomorrow… and it’ll be 8pm before we get out of here. And that will be too late to drag Jesse grocery shopping. (Thank you Kim, Daniel, and Caleb for the goodie box yesterday. I think that is going to come in more than handy tomorrow.)

It was 4:30pm before the doctor came to see us. She told us the same things that we heard throughout the day. I did ask her about the Echo/ EKG I see on the schedule for 8:15am tomorrow. I think Jesse and I’ll be going downstairs to get that done.

I remembered about 5pm that we need to change Jesse’s dressing today. That might have to happen later tonight. They have a lot going on out there right now.

Jesse did get sick around 5:30pm. The nurse hooked her back up to Fred so she could get Zofran. I think she needs to be on a running dose of that.

About 6pm, she needed to go again. This seemed to improve her stomach pain. In fact the nurse was coming to give her Benedryl, when Jesse declared she felt better.

About 6:47pm, the room service called. Jesse asked for pretzels. She has eaten nothing today because of being NPO for the surgery. At midnight, she will have to be NPO again. They called to say they were waiting on the nurse to hear from the doctor to say she could have something to eat. And now she has fallen asleep… Strangely when I talked to her nurse, she’d heard nothing from them.

That frustrates me severely. Someone keeps entering into the computer the NPO times wrong. And Jesse unfortunately suffers because of it. I am sure they have had parents feed kids when they shouldn’t, but I am not going to do that because it could cause her a great deal of harm. They want her to gain weight… but don’t make it easier for her to eat.

Thank you for the cards today from my family in North Carolina. Thank you Charlotte and Terry for your cards. Thank you Cindy,Mike, and Biscuit for the alligator cards 🙂 Thank you Meme and Papa, Marion ( I was so excited for Sarah when she was a St Bald’s ambassador and so happy for her from your posts 🙂 ), Nancy, Michelle, Ronnie, Andrew, Addie, Aubrey, and Avery for the cards.

Thank you Terri and Jim for the card aquarium.

Thank you Danielle, Sergio, Sullivan, and McKenna for the pictures and fuzzy man. Jesse pulled out the fuzzy exclaiming that Sullivan must have made it 🙂

Thank you Suzanne and Dan for the Flipeez hat. We had just seen a commercial for that this afternoon while waiting for the doctor. Jesse was so excited to put it on and wave the monster hands.