At 5:45 my alarm went off to wake me to do Jesse’s meropenem. The alarm went off again at 6. I got up, cleaned her CVL, attached the elipse, and set my alarm to get another few minutes of sleep.

At 6:30, I disconnected the elipse, and began getting ready to have Jesse drink her two doses of CT contrast. After the second dose at 8, we headed for St Jude and triage. Triage is where they take blood for labs. Jesse has decided that they will always hurt her there and therefore she fusses the entire time. I keep telling her they will not always hurt her because of the CVL, but she has no interest in believing me.

In a way I wish they had one set person so Jesse would learn that they don’t want to hurt her. I think the changing of people messes with her head.

After getting her weight, we headed to wait for her CT Scan time. As we were waiting child life stopped by. The specialist commented that she thought Jesse could do the CT Scan without sedation. I totally agree considering the test for her takes 5 minutes. The specialist said she would email someone to have it noted on Jesse’s chart that she doesn’t need sedation for CT Scans.

Our time for meeting with sedation came and went. Finally about 10, a sedation nurse called Jesse’s name. He apologized that they were running behind. I asked if Jesse could do the CT without sedation. He was happy to agree.

Jesse got on the table and laid her hands about her head. The nurse hooked up the medicine she needed, and the test began. And within 5 minutes, Jesse was done and we were out the door.

Our next appointment was at 11:30 with D clinic and her main oncologist. I was hoping Jesse would want to eat during the time we had. When we went into the cafe, there was no food out save for the pre-packaged stuff Jesse has already shown no interest in. I was a little surprised that the food was cleaned up so quickly.

Jesse decided that she just wanted a drink. We then went to D clinic to wait for her appointment time. While she waited Jesse checked out a volunteer’s collection of wind up toys. This volunteer used to be a pediatrician.

Finally it was Jesse’s turn. Her main oncologist was in a meeting so they asked if Jesse could come back at 2:10 since we had to return for MIBG injection. Jesse was complaining of bone pain so I had no trouble leaving to come back to RMH to get her oxycodone.

The nurse did have some really good news for Jesse: her ANC was 4800! She is done with the GM-CSF shots for this round 🙂

After eating lunch and getting her pain medicine, Jesse and I headed off to Fisher Optical to get her right glasses. The address for Fisher is 920, but you have to enter the building at 930. It was crazy. From what I could gather this is on the University of Tennessee’s campus.

The lady working at Fisher looked like she had taken a very nasty fall. She had several stitches above her left eye. It took a little time to get her to listen to me about Jesse’s current glasses. She carried on about how they didn’t have that style. I finally got her to understand that these were just readers we bought at Target to give her some sight because the antibody has caused her eyes to remain dilated. Plus we started round 2 so fast after round 1, we didn’t have time to get to Fisher for her glasses.

She fell in love with Jesse all because Jesse said please and thank you and was helpful in getting her glasses fitted. Unfortunately while we were there, the screw fell out of Jesse’s readers. The lady was extremely kind in giving Jesse 2 pairs of readers to get her through until her correct glasses arrive. She also gave Jesse a case to keep them in. Jesse was beyond excited.

We finished up around 1:45 and headed back to St Jude. When we arrived it was a little before 2pm. Jesse was due for another dose of meropenem. I hooked this up while we were back in clinic to wait for her meeting with the oncologist.

The guard at the gate keeps giving me a hard time because another security guard who filled out the tag put 2013 instead of 2014. Every time we see him he comments on how the tag is altered. Yesterday I’d had enough. I looked at him and said, “Dude, I really have no desire to break into this place. I would much rather be home in Virginia.” All the other guards look at the tag and wave us through.

He came in about 2:15 and admitted he’d not yet had time to look at her CT Scan, but from the page of information sent to him, he felt pretty positive about it. I think he really wants to wait on his full opinion until her MIBG and bone marrow biopsy have been read. Since those test will occur tomorrow, it’ll probably be Monday.

He asked Jesse is she had any questions for him. She nodded her head. He asked what it was, then had a good laugh when she just said “Hi!” I told him she was feeling froggy. This is a new term for him, but one we use around the house all the time.

We left him, made a stop by pharmacy for a refill of neuronton, then headed to Nuclear Medicine. The technician remembered Jesse. She was really pleased to see how well she looks. I am surprised that she remembers us. Her brother lives in Chesapeake, VA, and we talked about the snow back home.

Before we left St Jude for the day, Jesse and I checked the mail. Thank you Mrs Smith for the tights and socks. Jesse loves them 🙂

Thank you Stephanie for your donation to St Jude. They are doing great things here everyday. Thank you Willie and Renee for the card and well wishes. Thank you Uncle Greg and Aunt Beverly for the stickers and treat money. Jesse hasn’t had time to really go shopping yet for anything between being in the hospital and appointments (and to be honest a few times I feel like I am barely keeping my head above water). This place will keep you running. She wants to go to the zoo since they have Panda Bears here. Thank you also for cutting your hair. Jesse loved the picture on Facebook.

Next we had to run to the grocery store. I need her to gain weight before we begin Round 3. The gentleman at the West Memphis Kroger asked if it was ok to ask what Jesse was fighting. We told him. And he told us that his mom told him that he’d had something removed from his stomach when he was little. He was super nice, and I really pray that his life is full of great things. He patted me on the shoulder when we left and said keep the faith. 🙂

Back at RMH I found a note on the desk saying the staff had conducted room inspections. Since we had no comments, I guess Jesse and I are doing ok at keeping the room clean. I did find a long hair in the bathroom. I know I didn’t leave it because I haven’t had hair that long on over 3 years. And I know Jesse didn’t leave it.

Jesse’s meropenem finished at 10:30pm. Got her to take her zofran for the night, and tried to grab some sleep for the craziness of tomorrow. 7:30 am and 8 am labs, 8:30 D clinic, 9:00 sedation, 9:30 to 11:30 MIBG, but we’ll be done by 1pm CST.

At midnight, I awoke with a start. Jesse threw up what looked to be most everything she ate yesterday. I started washing the sheets, then walked the comforter down to the front office to find the mythical yellow container where comforters are placed to be washed. The guy sitting at the computer told me to stick it in the laundry room and housekeeping will get it around 8am when they arrive. I really hope this is true. I’m going to call to make sure.

Around 2:30am it was finally clean enough to put in the dryer. I fell asleep until it was time to do Jesse’s meropenem at 6am. Afterwards we got ready to come over to St Jude for labs and assessment. Unfortunately this morning Jesse weighs 15.2 kg (33.4 pounds).

Now we are waiting for clinic to open for our next appointment. I heard something pop in my neck when I placed Jesse on my shoulders after leaving triage. Yeah.

Jesse woke up before I did this morning. I am exhausted, so I slept a little longer with her sitting next to me in the chair.

Around 8:45am, I started to wake up. The nurse came in with the news that Jesse’s ANC was 700! Glad I was wrong on that one 🙂 Her hemoglobin had also climbed to 8.3 on it’s own. The rumor had been release when her ANC reached 500.

The nurse practitioner stopped by next. She confirmed that the plan was to talk about releasing Jesse in rounds this morning.

After she left Jesse asked for pancakes. The nurse asked that I let her know when the pancakes arrived so she could give Jesse her morning medicines at the same time. When she came in I asked her about the dental visit Jesse had scheduled. She left to make some calls about it.

At around 10:30 a man who does patient transportation came. He walked us to x-ray for Jesse’s dental x-rays. She was scared because she was unsure of the machine. We explained to her how it would work. The technician lowered it to her height. Jesse did a great job of standing still while the machine circled her head.

From there, we went to the dental clinic in C clinic. Strangest thing… I think the door for the dental clinic is the only door I have encountered at St Jude without a handicap button, save for patient rooms.

The dental assistant was surprised to see us. She said she had rescheduled Jesse’s visit because of her low ANC. Think she forgot to notify the department that keeps the schedule I can see online updated. Since this was the second time we have rescheduled this appointment, I asked if she could half be seen. She agreed saying that they would only consult today and count her teeth.

I explained to her that Jesse has 9 silver caps and 4 veneers because of chemo in 2011 when she was 2 years old. She basically entered the information into the computer and let the dentist know Jesse was there.

The dentist counted her teeth. From the x-ray I could see she has teeth growing under her current baby teeth. Mike and I have been concerned about how these teeth will form. We have also been concerned about whether or not Jesse’s baby teeth will fall out on their own. The dentist told me that until they form more we won’t know. From the way he talked, it sounded like the chemo and radiation might interrupt the formation of some of her teeth.

Jesse does have molars coming in behind caps. The assistant asked Jesse how often she brushed her teeth. I was quiet and let Jesse answer. At first she said one time a day (which isn’t true…she does brush twice a day most of the time.) Then Jesse told her twice a day.

I did really good keeping my mouth shut while the assistant gave the “You should brush twice a day, no sugary drinks or food speech.” I would have loved to ask her for food recommendations when I have nutrition breathing down my neck over her weight (which was 15.5 kilograms this morning)… and she’s not interested in the food that is served at St Jude. I also wanted to ask her how I was to get Jesse to stay away from sugar when it is added to so much of our food to make it more appealing. And right now her taste buds and smell are all jacked up thanks to chemo.

Sometimes I wish these people had to spend time taking care of a child with cancer. Not that I want them to suffer, but to empathize with all the feelings. I already feel like I failed her in the gene pool. Combine the gene pool guilt with watching her having to undergo treatment twice with drugs that are extremely harmful makes you feel like you have totally given your flesh and blood the short end of the stick.

The dentist did agree to paint on some fluoride that lasts a month. And when we return next month, maybe he will seal Jesse’s exposed teeth. We’ll just have to see.

After that Jesse and I returned upstairs. Since I had work that needed to be done, I asked the nurse when we’d be discharged. She told me it would be after 2pm. This gave me plenty of time to do what I needed to do.

I ran to the cafe to get some lunch and a drink because I hadn’t had time for breakfast this morning. Then I ran back to the room to be on our weekly webinar. And of course at that point in time everyone and their uncle decide they had to see Jesse. I love how that always happens… not. I need to learn how to stifle the I’m busy signal to the universe because it seems to draw them in. Maybe if I send out the I really have to see you now signal it will repulse them.

First to stop by was the clinical pharmacist to go over the medicines we have here at RMH. Turns out I need more neuronton for Jesse because for some reason I stuck it in the cabinet instead of the fridge last time I gave it to her. And therefore it’s no longer good. Why I did that I’d love to know.

Then the doctors all stopped in. Since she looked great they didn’t hang around. The attending did compliment me on how well behaved she is. I told him he didn’t live with her. But I do appreciate that he thinks she is a good kid.

Then the take home/ IV pharmacy lady dropped by to get a consent form signed to send Jesse meropenem eclipses to the RMH. She will be on meropenem through February 6. This is cool with me. I love the eclipses. Flush her with saline, attach the antibiotic for it’s time period, flush with saline, and heprinize. Easy peasy.

Then a volunteer stopped in. She asked if Jesse wanted to go paint, then proceeded to tell me she could only paint with her for 20 minutes because she was helping another child. I actually let Jesse go with her. I figured if anything Jesse would give her a run for her money 🙂 And I took the opportunity to finish up what I was doing.

At 2pm, the nurse put the meropenem on Fred. I ran out a load to the car.

When I returned, Fred was getting ready to beep. We notified the nurse, who put a flush on the line. While this finished, she got Jesse’s shot and ethanol/placebo together.

After 15 minutes, we hadn’t seen the nurse. I needed to call my boss to talk about work. I figured I would seize the moment to talk with him since we were molding. Lo and behold the nurse appeared just as I called him with shot in hand. This of course sent Jesse into orbit.

Jesse asked that I give her the shot all while yelling for me not to hurt her and that she was too precious to hurt. Once the shot was done and ethanol put in, we headed to pharmacy to get her CT contrast for the scans and GM-CSF shots. I am really hoping that tomorrow morning’s lab work will say ANC is 2000. This means Jesse is done with GM-CSF shots for round 2.

I despise the way they do contrast here. At CHKD, they push it through the lines. Here she has to drink it. Once at 7am and another at 8am. Last time she did this, she threw up. I plan to give her zofran at 6am to hopefully help the contrast stay down. This just seems like added torture to have kids take the contrast this way.

Jesse and I then went to the mail room. Thank you John, Beth, and Alex for the books. Jesse loves the pictures of the horses 🙂 Thank you Ronnie, Jennifer, Graham, and Blake for the markers and Doc McStuffin books. Jesse was really excited to read them 🙂

Jesse was so excited to go through the annoying turnstile door and into the sun. It felt so good. She laughed at being outside in the sun and having escaped.

When we arrived at RMH, I noticed the door to our room was not locked like I had locked it. But being that I am occasionally ditzy, I thought maybe I had screwed up. I set Jesse on the bed and was getting ready to head back to the car for our suitcase when the phone rang.

It was RMH front desk with a package for Jesse. This package was her meropenem that needed to be refrigerated. Once that was in the fridge, I went for our suitcase. When I returned to the room, Jesse asked me to throw away a piece of paper. As I went to throw it in the bathroom trash can, I noticed a blank piece of lined paper in the can. Really odd because I know I don’t have that kind of paper here and wouldn’t have thrown it in the bathroom trash can in the manner it was.

I put the paper the rest of the way in the can, then started putting away mine and Jesse’s clothes. As I pulled my drawer open, I realized all my clothes were askew as if someone had searched through them. I immediately called the front desk, who put me in touch with the house manager.

Supposedly maintenance had been in the room today to fix the handles on the drawers and cabinets. She apologized saying they should have been neater in their work. In my opinion, they should have had a note in the mailbox or one in the room. Especially considering that in the mailbox was a note about people stealing other people’s food, and on the phone there was a message about someone stealing another person’s entire load of laundry.

The laundry incident happened over the weekend. A family started a load, then had a medical emergency and had to leave. They were using the downstairs laundry (I use the upstairs one because it’s right outside the door), and now can’t find their clothes.

Jesse told me she was hungry when I got off the phone. We went down to the kitchen to make dinner. She took two bites and said she was feeling sick. I think something that someone else was cooking got to her.

She did claim to be well enough to check the mail here. Thank you Ms Collins for the card and note. Jesse really enjoyed going to get the mail here. I am thankful we made it back to the room without getting sick.

Back in the room she asked to call her sister and friends. She wants to see them so badly because she wants to be with them. During the call she had a really bad breakdown of wanting to be at home clearing the driveway and sledding in the snow. I keep explaining to her that if we return home now, she has an increased chance of getting sicker. And while this is 6 to 8 months, it is only 6 to 8 months of a lifetime. And we are trying to make her lifetime long.

After getting off the phone, Jesse complained of being cold. I took her temperature: 98.1. She is sleeping now with her eyes half open (freaky how that child sleeps like that). I am getting ready to give her the 10pm dose of meropenem. The next dose will be at 6am.

Do not ever go with Samsung Galaxy S4… horrid excuse for a phone. I have to restart it to connect to my hotspot lately. And I need it because RMH blocks Jesse’s site for some reason. Will have to explore that further one day.

This morning the first thing I asked Jesse when she woke was where she hurt. Praise the Lord she didn’t hurt anywhere!

Her hemoglobin was 8, platelets 54, ANC 100, and white blood count 1.1. It is interesting to me that last time her ANC rose to 100 her white count was .6. I think we’ll be here tomorrow because if pattern holds true, she’ll be 200 or 300 tomorrow. And I will be surprised if they don’t have to transfuse her hemoglobin tomorrow.

She was hungry, but the food here doesn’t seem to appeal to her. I fixed her some English toast and Nutella. Later she asked for an egg roll, but it didn’t taste the same as back home. She asked for pizza later on, but that didn’t taste good either.

Before our first activity I went to grab a cup of coffee. As I was downstairs I heard a small voice yelling “Elmo!” I looked around to see that I was the only one wearing a red sweatshirt. So I guess he associated the red with Elmo. There are worse things I have been called 🙂

Our first activity this morning was to have an Echo/ EKG. Jesse really didn’t want to have it done, but the technician was brilliant. He stopped and talked with her about Disney World and who was her favorite. He cleverly talked her into being comfortable with him and therefore doing the Echo and EKG.

The next group to stop in was the infectious disease doctors. Jesse has klebsillia and E. coli in her urine. They are not going to give an additional antibiotic because the meropenem covers that too. As for a prophylaxis, he wasn’t sure. He really doesn’t want her to have one because he feels that it just grows new, more resistant bacteria.

I can see his point on that… and I can see that we were on one last time, and didn’t play the in the hospital for a fever after every round. But if this is what we have to do this time, this is what we have to do.

And it turns out, she is still in the Ethel study. Because the bacteria was internal, they are going to keep her on the study.

I took the opportunity when the volunteer stopped by to go grab a shower.

The nurse practitioner stopped by. I asked her about the upcoming MIBG scans. Thursday Jesse will have the injection. Friday will be the scans. Tomorrow we’ll start the SKI drops to protect her thyroid from the radioactivity of the MIBG fluid.

After lunch, I took a little nap. I honestly am wiped and whipped. The attending oncologist came in. He looked at Jesse and was pleased with how she looked.

Her main oncologist came in later. He was pleased with how she looked too. And she actually had been up dancing before he came in.

Around 3:10, the nurse came with the shot. Jesse wanted me to give it to her. I still can’t figure that one out. Why me? Then it was time for Jesse to have some time off of Fred. She and I went to check the mail and down to the cafe during that time. Jesse really enjoyed not having Fred attached to her.

At about 5pm, they reattached Fred. Around 5:30pm, I noticed she was very quiet. She was sound asleep.

A little after 7, I called home to talk to Chris, Emiliegh, Landan, Melinda, Jimmy, Maggie, and Pumpkin. Jesse woke right up when she heard their voices. She was so excited to talk with them :)She told them about the baby elephant name Arruba, who lives in an elephant orphanage in Africa. Thank you Randy and Debbie. Jesse loved the pictures of Arruba. Maybe one day we can travel to visit Arruba in person.

She is now watching Phineas and Ferb laying in the bed. Her temperature was 100.2 tonight. Praying that she is not trying to get another fever.

I see from her calendar that tomorrow she has CT contrast from pharmacy pickup, and Thursday will be the CT scan before the MIBG injection. I am trying to figure out what ACU recovery on Wednesday is all about. Strange that it is on the TV calendar, but not online.

Thank you Paula and Kevin for the handmade quilts. They are fantastic!

Thank you Josephine, Susan, Amber, and Brandi for the clothes, bobble head monkey, coloring book and markers. Jesse loves the monkey 🙂 And her nurse today graduated from Lynchburg College in 2010.

Thank you Sally, Scott, Hunter, and Hannah for the books, jelly beans, peppermint patties, and slinky. Jesse loves the book with the Disney princesses.

Thank you Mrs Delo; Mike, Cindy, and Biscuit; Aunt Carolyn, Brenda, Linda, and Lindsey; Debra; Carolyn; Laura, Amy, and Bryan for your cards and well wishes 🙂

Well I finally did it. I tripped over the pole… taking it and Jesse down. By the grace of God, I didn’t pull her CVL out of her. I can’t tell you how horrid I feel. Jesse has a scratch on her back at the base of her neck. Right now that is the only visible sign of the accident. I am praying that I haven’t caused her more damage.

This morning started out like normal. Her ANC is still 0, hemoglobin and platelets are good, and white blood count has climbed to 0.5. I really hoping that this climb and lack of nausea is a good sign for her ANC.

While I was on the staff meeting, Jesse went to the nurse’s station to draw and visit. She wasn’t gone long, which is fine. I have trouble asking the nurses or volunteers here to watch her because I feel that she is my responsibility. And I feel guilty asking others to watch her.

The nurse practitioner stopped by before Jesse left to check her out. She mouthed to me that she’d be back to talk later.

I set up the table with Jesse’s basket of stuff. She stamped for a bit, then she did a little homework. Afterwards she played with play dough. And in between all that she ate yogurt with nuts and chicken noodle soup.

The doctors for oncology stopped by to talk about her right labia and over all health. They are pleased with how she looks. She told them she was feeling froggy. It’s a term we use at home for feeling spunky.

Jesse wanted to try some ice cream later on. She rode down on the pole to the cafe with me, and just like this morning when she rode Fred down, we returned unscathed. And I, like a twit, failed to see where her pole surfing could totally go wrong.

Around 4pm it was time for the shots. Today was the last day of IL-2 for this round. The nurse gave her a shot and I gave her a shot. The nurse had to give the IL-2 because we are inpatient.

Yeah got in trouble twice today… before the shots, the line care team came around to check things. Turns out that I am not supposed to change dressing while we are inpatient even if Jesse asks me to. The supervisor for the solid tumor side misunderstood when I said she asked me to. He thought I meant the nurse asked me to. I quickly told him that no, Jesse asked me to.

Jesse was really upset to hear that I couldn’t do the changes while inpatient. And it frustrates me a little too. I understand that they are conducting a study to see if doing sterile inpatient dressings are better than doing the gauze dressings. And my doing the dressing change could mess up the study because I am not a nurse nor an employee.

After the shot was done, we head down to patient services to check the mail. Jesse had several cards and 3 packages. And here is where I royally screwed up. I should have not let her ride the pole. I should have told her that I couldn’t care everything at the same time and made 2 trips.

But nope, thought I could do it… and was afraid that she would insist on coming back with me. I got the packages situated. As I turned her, myself, and Fred around I realized we were falling over. All I could think about was, “Crap where is Jesse, where is the CVL, where are the lines?” Along with “OMG what kind of parent am I?”

A nurse was down there with a new family getting them registered. She rushed over and helped us up. She called someone on the phone, and within minutes she was at our side. Jesse was balling from fear. And I felt so ashamed. There were 10 people down there that all saw us go down. I expected social services to show up to question my delinquency.

The nurses got us back upstairs, which was very nice of them. They insisted that I fill out a fall report for me. I know they have to have something on record in case I claim an injury of sorts. I have no intention of doing that. This was totally my fault. I am just praying that I didn’t harm Jesse more than the scratch on her neck.

Her nurse checked her CVL. That velcro strip they use to help hold the line in place is best thing since sliced bread. If her line was tugged at all, it held her line and loop in place.

As I was telling Mike what happened the child life specialist just stopped by to check in on us. She was surprised to hear it had happened. And reassured me it happens all the time and a whole lot worse. I appreciate her effort… still feel like I failed my kid. I have no intention of trying to take her out. None.

After she left the infectious disease doctor, who is the head Ethel study doctor, stopped in. He asked if Jesse had had the Ethel. I told him no because when I asked the nurse this morning about it, it wasn’t on the list. And having had the infection, I thought she was out. Turns out she is not right now. I’m confused…

He also said the lab still doesn’t know what is growing her urine, except that it is graham negative. Yeah. If the same things grows in the dish as was in her blood, they will think the urine was just contaminated. If something new grows, then the meropenum covers that. He also mentioned that it covered whatever is going on in her right labia.

He then told me he enjoys the complicated cases. He meant well, and it’s obvious he has a bright inquisitive mind that is going to help save lives. I did tell him I wished we were simple because that would mean we were at home getting ready to enjoy snow! (well honestly I might be fussing about the days missed from school, but I will try not to in the future.)

After they left, it was almost time to go watch Cinderella and make a craft. The sign showed a picture of cartoon Disney Cinderella, but they were playing Enchanted. Jesse didn’t really pay attention the movie. Instead she lavished in having the attention of the college kids and making a crown.

By 30 minutes she was ready to come back and call home. She asked to see her room tonight. And she had a breakdown of wanting to go home. With a round of “why doesn’t Sissy have to get shots” and “I’m tired of shots.”

She did make us laugh because Chris was dawdling to go to a shower, and Jesse’s little bossy streak kicked in. And Chris actually got a move on it.

We had to hang up because Mike’s battery was dying. Jesse watched a little TV before saying she was tired. She has complained of pain in her leg, arm, and heel tonight. She has also complained about her back. The leg, arm, and heel are potentially from the GM-CSF shot. They can cause bone pain. Since she feel on her side and the pain is on all different sides, we are thinking its the GM-CSF.

The back pain might be adhesion pain where the nephrostomy tubes were. The nurse mentioned that chemo can sometimes slow down the healing process. I asked him for oxycodone for Jesse so she can sleep. I also got some antibiotic cream to put on her neck to help with the scratches.

Jesse is pretending to be asleep now. Here’s to praying for ANC and less pain tomorrow.

Last night Mike, Chris, and I played UNO while Jesse watched. After a bit, it was obvious that both were done. It’s exhausting sitting around in a hospital room doing nothing but waiting…

Jesse was determined to stay in my lap all evening. She actually feel asleep in my arms. I am not sure if my sleeping a night away from her caused that effect.

Chris began complaining that her stomach hurt a little after Jesse fell asleep. Not sure if traveling effected her because by this morning she felt much better.

I fell asleep in the room with Jesse, while Mike slept with Chris in the parent room. Jesse was 99.6 Fahrenheit at 8pm. By 12am, she was 100. She must have gone down in temperature afterwards because the nurse didn’t wake me to tell me differently.

Around 6:30am Mike tapped my arm telling me to go sleep in the room with Chris. While I needed to spend time with Chris, that couch bed was not the best for my neck…

Around 8, we were all up. Chris and I grabbed a shower. Mike grabbed a shower next, then started a load of laundry. Between him grabbing a shower and Chris and I grabbing one, the attending and fellow stopped by. The cultures show that the current antibiotics are not the best ones to take care of the infection.

They have switched us back to meropenum because it is more effective for this strain. They also decided to give her platelets because her numbers were at 46. Her hemoglobin is good at 8.8. ANC is still 0, but her white blood count has inched to 0.3. She also has gained 0.1kg.

The attending also mentioned that we should have her on a prophylaxis antibiotic because of the stents. She is on a slight one (septra) for her CVL. They only give it twice daily three times a week here. I am really thinking now that bactruim back in the first round saved us from playing “What interior normally good bacteria, as long as it stays where it should, do we have in the blood and line now?” game. I asked the first line nurse we ran into about an antibiotic for that reason and was poo-pooed. Now because of the bilateral stents, we have a shot of getting bactruim back in the mix. We’ll see though… I’m sure his idea still has to pass the main oncologist’s agreement and other people’s too.

Jesse decided after the zofran and Benedryl kicked in that she wanted crab chips. Mike and Chris had gone to look for snacks. When they returned with Pop Tarts, Jesse wanted one in addition to the crab chips. Mike joked that the blood she got yesterday must have been from a pregnant woman. But Jesse didn’t want the Pop Tart long. One bite, and she was done with that.

After lunch, we took a walk to the covered porch and to see if we could find Hi-Ho Cherry-O. No luck on the game, but we did find phase 10 and Chutes and Ladders. The girls played briefly before wanting to do something else. I sat on the porch while Mike and the girls walked around. The internet out there was no better than in the room.

I did learn something very interesting from our nurse. I can request not to have certain rooms! I was telling her the internet was great in 2011, which is closer to Chili’s Care Center and the box was right outside the door. I am wondering if the care center is better wired for wireless. So from experience rooms 2058 and 2077 are out.

The nurse told me that often people request 2058 and 2077 because they are further away from the nurse’s station. Might be for more privacy and quieter (occasionally it does get noisy out there.) I’d rather be closer to the nurse’s station, plus privacy in a hospital… yeah privacy in a hospital…

Jesse asked the student nurse today to bring her teacher and classmates by before they left. They willingly obliged Jesse, and she and Chris had a lot of fun talking with them. Jesse was very kind in saying the whole group should get A’s.

The main nurse for the day brought them some play-do to play with. Chris made an impressive hot dog complete with bun, ketchup, and mustard. The nurse was even kind enough to pack some for Chris to have at home.

Around 4pm, I gave Jesse the shot. Then we walked Mike and Chris down to the lobby to meet their cab for the return flight home. It doesn’t get easier. I did have a moment today after Mike asked me why I was being so grumpy. It is hard to be away from home this long, but I can’t go home without Jesse because then I would feel really guilty. She had a horrible time with Chris and I being over at RMH. If it was Mike and Chris, she’d miss them… but me, that’s a whole other can of worms.

Jesse was really sad to see them go. I was too. To kind of distract her, we walked to the cafe to get a drink. Then we returned to the room. Jesse decided she wanted to watch Phineas and Ferb. She is tired of the crappy overly dramatic non-animated shows they have on TV (and yes I am taking a no name pot shot at 2 major kid networks.) Really wish they had just the Junior versions of those networks here. The junior networks are far less unnecessary drama and don’t try to find laughs at the expense of other people’s pain or embarrassment.

Yes I have movie and TV watching issues… and Jesse is picking those up too. And it is why I don’t miss cable TV.

Jesse asked for pancakes around 5:30pm. I ordered her some. While we were waiting for them to be ready, Jesse began fussing about her right labia and feeling like her pullup was stabbing her. Her right labia looked a little larger, but it wasn’t red all over.

The nurse looked at it. She suggested trying a cold cloth. Jesse didn’t think this helped. She tried a warm cloth, but that didn’t help either.

She called the resident, who arrived very promptly. He took a look. Given Jesse’s history, he didn’t feel that it was infection, but that it might be the tumor. The only way we’ll know for sure is scans. I will not be surprised if before round 3, they are going to talk about surgery to remove some of the tumor. From what I have heard the tumor is in that area.

Think I shocked the resident with how calm I am about all this. He wanted to prescribe Tylenol since she wasn’t presenting a fever. I don’t want to cover a fever in case Jesse tries to run one. I think he went with Tylenol since Jesse has been saying no on the oxycodone. I decided to pull rank on her tonight.

Currently we are just keeping an eye on it. And we gave her oxycodone to help with the pain.

Jesse ate half of the pancakes they brought her, then she ate a yogurt with nuts. And a little bit ago she asked for pretzels. Unfortunately after finishing the pretzels, her stomach was hurting. The nurse gave her Benedryl. And Jesse has fallen asleep. Maybe just maybe, her ANC will be 100 tomorrow and will start shooting up to 2000. If the do things like last time, the GM-CSF shot will stop at 2000. Her last IL-2 shot for this round will be tomorrow.

About 1am, the nurse let me know that Jesse’s line culturing was graham positive. At this point all I know is she has an infection in her line. I don’t know what kind 🙁

They did start her on vicamycin. And since 8pm last night she (knock on wood) has not run a fever.

The nurse practitioner stopped by this morning for an evaluation of Jesse. This was after Jesse had been weighed. She has gained .3 kg. Maybe this will keep the nutritionist off my back. We also talked about the fluid rate.

She felt that 55 was a little high and cut the rate to 40. She also mentioned that Jesse needed hemoglobin, her platelets are ok, her ANC is 0, and White Blood Count is 0.1.

Around 1pm, Jesse was surprised by her sister and dad arriving.

The infectious disease doctor came by. He is also the attending for the floor as well as the lead doctor of the Ethel study. He told us that the cultures were coming back variable. And until we knew what it was, we would keep Jesse on vicamycin and sephlapin.

He also told us that more than likely Jesse will be removed from the Ethel study. There are a couple reasons she’ll be removed.

1. The new infection in her line indicates that either she has the placebo or the ethanol doesn’t work for her.
2. They aren’t sure if she has a urinary tract infection, but if she does, then she is definitely out.

While it is a bummer, in a way it is one less thing to worry about.

Jesse’s red blood finished a little before 4pm. The nurse prepared her GM-CSF shot while I prepared everything for a sterile as possible clave and tape change. Jesse had agreed to allow the nurse to give her the shot if I’d do tape and clave change. But when the nurse came in, Jesse changed her mind. She wanted me to give her the shot. I have no idea why she wants me to give her the shot, especially when there are people around who have far more experience.

We got the shot out of the way and began tape change. I did better with getting the betadine right this time, but forgot the Velcro strip… causing me to have to start all over again. Jesse was very patient while I redid the cleaning of her site.

After finishing this, Chris and I went down to grab the mail.

Thank you card George & Margaret, Knob Creek Methodist Church, Jim and Jackie, Jim and Terri, and Mt Pleasant Baptist Church Bible Study for the cards and well wishes.

Thank you NC Family for the Minion hats. The girls love the hats. Thank you Jimmy, Melinda, Emiliegh, and Landan for my flip flops, food, socks, cards and drawings for Jesse, horse and ring. She loves the ring. Thank you Aunt Phyllis for the doll, clothes, Hair-do Harriet, flippy, gluten free food, snacks, games, hat, and coloring books. Jesse has changed the doll’s clothes already.

After opening everything, Chris and I went to RMH so I could clean the room and wash clothes. I think everyone else had the same idea at RMH last night. It was midnight before the last load finished drying and I got to pass out. Chris was out by 9pm.

At 7am, Chris was wide awake and complaining that she was hungry. We called Mike and asked what Jesse and he’d like for breakfast. They choose doughnuts, so Chris and I ran to West Memphis Kroger.

Mike told me that Jesse reached a temperature of 99.9 last night, but that it went down on it’s own. Fever here is 100.4 twice in one hour or 100.9. Her hemoglobin was 7.7, platelets 23, ANC 0, and white blood count 0.2. I am hoping that maybe just maybe it is creeping up.

Since her hemoglobin and platelets are low, she had both transfused today.

This afternoon the attending doctor stopped by to tell us the infection in her line is klebsiella pneumoniae (The CDC’s page about klebsiella pneumoniae). He mentioned that antibiotics would only change on Monday if the lab tests showed one antibiotic worked better for treating it.

This is bacteria that is inside all of us according to the attending. He was relieved that it wasn’t E. coli again.

He also told us that they counted 40,000 colonies of the bacteria in her urine sample. St Jude doesn’t consider this to be a urinary tract infection until they count 100,000. Because of the stents Jesse does have a possibility of having infections.

He commented on how spunky Jesse looked now compared to when he met her at Christmas. He also mentioned that the cultures take 24 hours after the first ones show no growth. This is a good sign that the sephlapin has stopped the infection in her blood and line.

Shortly after he left, the fellow appeared. She told us that they would be stopping the vicamycin because the sephlapin covered this bacteria.

After awhile Jesse began complaining that her left back flank was hurting. We called the nurse because of concern over the stent. She has brought Jesse oxycodone and a heating pack while we wait for the doctor to decide what they would like to do.

The nurse came in around 2pm to tell us that they were moving Jesse to a different room. When we’d been admitted, the solid tumor side was full. They’ve moved us over to solid tumor now. And into a room away from the internet. So I get to play the up and down internet game again. I’m so tired of this.

At 3:45pm, the new nurse came in to give Jesse her shots. She took one and I took another, and we gave them simultaneously.

Afterwards Jesse wanted to walk to the covered porch and checkout the library. She’s been awake since 5am and had Benedryl and oxycodone, my hypothesis is she is fighting sleep.

Jesse felt warm to me when we woke up this morning. I took her temperature: 100 degrees Fahrenheit. I gave Jesse her morning meds, and we headed to over to triage for her blood draw. Thankfully her weight had stayed at 15.2kg (33.5 lbs).

At triage, her temperature was still 100. Jesse was talking about being hungry, so we went to the cafe. Jesse didn’t see anything she wanted. Luckily the vending machine did have something she wanted to eat.

We then met with a PK nurse. St Jude has been conducting a study for 15 years looking at how genes and medicines interact. They have asked Jesse to be part of that study. Plus St Jude has started another study to tell parents which drugs they are finding that work with which genes the kids have.

Then we waited for our clinic appointment. Jesse complained that she was tired, but didn’t fall asleep.

In clinic, the nurse took Jesse’s temperature: 101.3. Line culturing, antibiotic, and waiting for a room to be ready were the next steps. Finally around 11, we could go upstairs. She has no cough, no runny nose, so we have to wait for the cultures to come back. This will take 24 hours for a “fast” reading. And 72 hours for the official reading.

Once Jesse was settled, I ran back to RMH for her GM-CSF shot vials, needles, clothes, and requested toys. I was gone for 30 minutes, and luckily nothing happened during that time.

Since it was a little after 12:30pm, Jesse asked for soup. She ate only a bite of the honey bun from teh vending machine. But by 2:30pm, she was singing the stomach ache blues. The nurse had already pre-meded her with Benedryl for platelets. Luckily at 3pm, she could have zofran.

A volunteer stopped by asking if we need anything and suggesting that she come down to the playroom. I am not sure if it is me… but some of these volunteers make me really uncomfortable. Not sure if it’s because I think they are judging me for not being overly responsive to them…

At 4pm, I got the vial for Jesse’s GM-CSF shot. The nurse told me the IL-2 shot had not arrived yet even though she’d been asking pharmacy for it since we arrived on the floor. I knew they had the shot ready for Jesse this morning because I stopped by pharmacy to check. I had also told them to hold it because the ethanol/placebo wasn’t ready.

It actually made me really hot under the collar that pharmacy didn’t send the IL-2 up when requested. I hate giving Jesse shots, but I try to do them at the same time to minimize the trauma. I went ahead and gave Jesse the GM-CSF shot.

At the time I was drawing up the GM-CSF shot, the nutritionist stopped by. She wanted to talk about the kilogram that Jesse lost and what would she eat. Hmm… you gave her chemo, dropped her ANC to 0, and want her to gain weight. She wanted to order Jesse a whole case of chicken noodle soup. I told her not to. Past experience with Jesse has shown that if you do that, she’ll decide she doesn’t like it anymore. I find the nutritionist infuriating. I feel like she is riding my back to force Jesse to eat. I know that she just wants to help because Jesse should be eating to help with her health. But how can you force someone to eat when you load their system with chemo.

I got a feeling that before this over… I am going to loose the battle to keep her off TPN.

I promised her once I gave her the shot, I would check the mail. As I was walking out, the nurse let me know she had called pharmacy. They acted totally surprised that the IL-2 hadn’t been sent up yet.

I came back and gave Jesse the shot so that it’d be done. Then I went to the mail room.

Opening the cards and packages brightened Jesse’s day. But after a few her stomach was hurting again.

Later she wanted to talk with Mike and Chris. Then asked me for something to drink. I noticed they have her fluids at 55. With chemo it has normally been 46. The nurse explained that this is maintenance rate for Jesse.

I ran down to get Jesse a drink she’d asked for. When I returned a volunteer was in the room with her. Ack. I keep telling myself they want to help… but just not sure what the deal is. I had gotten myself food too, but I didn’t feel right trying to eat with a stranger in the room.

Finally Jesse’s pump started beeping, and thankfully she left. I know they are trying to help, but after 5pm, the only people I want to see are the nurses. The volunteers sometimes just add another level of people in and out.

Jesse told me she was tired and handed me her glasses. Her dad texted at the same time asking if she wanted to Face Time. Jesse really enjoyed seeing Sharon, James, Gary, Melonie, her dad, and sister. And she has been talking to me about school, winning her sister a prize, and telling me she is going to explode (throw up).

We met our new nurse tonight. And he said some words that I think I was starting to forget. We need to keep our eyes on the end of treatment and Jesse being well. It’s so easy to get bogged down in the minute of everyday and the complete suckiness of not being home (he didn’t say suckiness). But we should fight to remember how blessed we are that Jesse was accepted into the study.

Funny thing was I wasn’t complaining. I think this might be give the speech he gives all families that meet him for the first time. And it was good to hear those words to remember, even though I was trying to explain that we’ve been in these shoes many times. I need to give up try to explain that because the professionals here don’t want to listen to me. I wish they would put a brief history in her notes for the nurses.

Jesse is unfortunately running a fever of 103 tonight. I asked about the fluids running at the higher rate. He explained the doctors might have requested that to flush out the tumor cells that were killed by chemo. She is also complaining her legs are hurting on top of her stomach hurting. She is refusing to take the oxycodone. But did let Fred take Benedryl for her.

Thank you Ginnie, Michael, Hannah, and Aaron for the wreath, stand, DVDs, pretzels, tissues, crayons, hat, food, and stickers. Jesse loves the wreath.

Thank you Mrs. Brown for the flowers, blanket, coloring books, picture, and food. Jesse commented that the flowers are great because they won’t die. And she loved the glittery picture.

Thank you Deb for the blanket. Jesse commented it is beautiful and soft. 🙂

Thank you Mrs Touhy for the princess headband and coloring book. Jesse is really excited to wear it when she comes home.

Thank you Aunt Dale for the card and gift card. Thank you Jimmy and Nancy for the card. Jesse loved the tabby. Thank you Peeler’s Fish Group for the well wishes and card. Thank you Mrs. Ro for the card and stamp picture. Thank you Chris, James, Jim, and Donna for the card and well wishes.

Thank you Mt Pleasant Baptist Church Tuesday Morning Bible Study for the well wishes and card. Thank you Mt Pleasant for the support too. We greatly appreciate it.

Thank you Mrs. Van Gelder for the stickers. Thank you Uncle Greg and Aunt Beverly for the card, support, and stickers. Jesse was really excited by the stickers 🙂

Thank you Pete and Mindy for the card. Jesse said the dog made her think of Maggie 🙂

Thank you UMW of Knob Creek for your card. Thank you Autumn for your hand drawn card. Jesse enjoyed your drawings 🙂

Thank you Jeanette and Beth for your cards and well wishes. Thank you Ruth and Jackie for your cards and support.

Thank you everyone for your support, prayers, and help. All are greatly appreciated.

This morning Jesse wasn’t interested in eating. I am not sure if her stomach hurt from chemo or from nervousness. Today was her first day in her new class.

We went over to St Jude a little early to get her mail. So nice to have my vehicle back 🙂

Class started at 10am and lasted until 11am. There looked to be 3 or 4 other kids in her class. I could hear the teacher ask them to write “mitten.” They talked about snow, measured a polar bear paw, and read Froggy. This version of Froggy, he made a cake.

Jesse was so excited about reading Froggy that all the way home she talked about the original one where he forgets his underpants. It’s a cute book if you haven’t had the chance to read it, I suggest you do 🙂

Back at RMH, Jesse wanted nutella on English toast for lunch. Around 2:30pm, she mentioned to me that her stomach was hurting. I went ahead and gave her Benedryl along with her other 2 medicines scheduled for that time.

At 3pm, I put the ethanol/ placebo in Jesse’s lines to sit for 2 hours.

Around 3:30pm, Jesse told me she was hungry again. We went downstairs and she devoured a can of chicken noodle soup. Luckily at 4pm she got zofran, so I (knock on wood) didn’t hear her mention her stomach hurting for a couple of hours. (jinxed myself… no more acidic foods might be the best goal)

Also at 4pm, it was time for her shot. Today she only gets one: GM-CSF. And today she screamed impressively. The evil side of me says I should tape the screams for Halloween. Yes I know bad, bad joke. I hate giving her the shot, but she needs them to rev up her immune system.

Jesse watched both Scooby Doo DVDs after the shot. She figured out the end of one of them before it was revealed. She was very disgusted that I didn’t realize the villain was wearing the same clothes as the sweet grandma. Thank you Keith, Tammy, Brody, and Spencer for the DVDs, stickers, Spiral art, and lotion and body wash for me. They smell great and Jesse even complimented me on not stinking 🙂

Thank you Pat and Dallas for the hat, Frozen book, stickers, monkey straw, teddy bear, and lotion for me. Jesse was really excited about the book. She loves the wand with it 🙂 The lotion is extremely wonderful to have. I have been washing my hands so much they are cracking.

Thank you Meme and Papa for the “Jesse” doll with hat and blanket, plus Jesse’s matching hat, blanket, and pillow case. Thank you for the paper dolls, stickers, book, and money. Jesse loved the hat and doll. She even commented on the doll having freckles too. 🙂

Thank you Gary & Andrea for your support.

Thank you Sunshine Fund Family for the gift card.

Thank you Nancy & Jimmy for the card and prayers. 🙂

Thank you Lyman and Debbie for your donation to St Jude.

Tonight we went down for dinner put on by a group raising money for the RMH. Jesse wanted the lasagna, but it didn’t stay down long. Luckily it stayed down long enough for me to make a potato and get her back to the room.

While I was talking to Mike tonight, Jesse asked in her sleep if she could just be finished. Comments like that make me nervous. I asked her, “Finished with what?” “This cancer.”

Tomorrow I think will be a long day at St Jude. From her paleness and way she talks about being tired, her hemoglobin has got to be low. And I am positive that she’ll be close to needing platelets.

We actually got the day off from St Jude… hope I am not jinxing us with that statement. Jesse and I were awake by 8. ( I actually slept in)

She wanted an English toast pizza, so we went down to the kitchen to fix that and my breakfast.

After let my stomach settle, I went for a run on the treadmill while Jesse watched TV. Felt really good to run on the treadmill.

Jesse wanted edamame for lunch. Sadly afterwards she began to complain about her stomach. She finally let me give her Benedryl.

Around 4pm it was time for Jesse’s shots. I am sure that people here at RMH are loving the screams of terror at 4pm every day. Just as much as I enjoy causing them. I guess if the front desk calls about how are stay is again today, I might think that someone has called and complained. I could take her over to the medicine room at St Jude. But that would just prolong the mental torture of it.

Jesse does a great job of holding still. She screamed until the shots were given, then was fine. I heprined her lines, gave her some zofran, and she is waiting to go downstairs and play bingo.

Jesse played two rounds of bongo before wanting to come back upstairs. She ate a fudge round, and now her stomach is upset again. Crossing my fingers she keeps it down.

Tomorrow Jesse has school for the first time. She is excited one minute and petrified the next.

Side note: Do not ever get a Samsung… last night wouldn’t let me access my hotspot. Despise this phone.

Today Jesse had labs to see where her counts are at. First they draw the blood needed to test at Triage. The nurse kept trying to get Jesse to talk with her, but Jesse wasn’t interested. She took her blood pressure, and since Jesse was not happy, it was a little high.

Then she took her temperature: 37.1 Celsius. I asked her for the Fahrenheit, she tapped the button and on her machine it gave 100.1. To double check she took the temperature again, 37.1 Celsius. I swear to you that is what she said… and this sentence will make more sense in a few. (37.1 Celsius is actually 98.78 Fahrenheit)

She also asked us where we were from and commented how lucky we are to have missed the snow. I’d love to be shoveling the driveway… sledding down the little hill… fighting with all the wet clothes from having to do laundry. But I guess my perspective is different.

Jesse didn’t feel that warm to me, but I was a little concerned. Our next stop on the schedule was D clinic for follow up at 9:45am. Since we had time, Jesse and I went to the cafeteria. Her weight is 15.2kg (33.5lbs). Jesse felt like eating, and I wanted to take advantage of that. I don’t want her to end up on TPN.

When we walked back to D clinic to let them know we are here, they were still closed. I walked up to patient registration to find out if we should go to the medicine room. And we should have. We registered and began to wait for them to be ready for us.

About an hour into waiting, Jesse had to pee. The one bathroom in the waiting room was occupied. So we went into the bathroom in the hallway. This one had two stalls. Jesse went into the first available stall. Immediately she got it in her head that woman had stunk up the space… and with that it was over. Threw up in her mask, down her shirt, onto her skirt. Too top it off, I stupidly forgot to pack a change of clothes. Must be ready for that next time.

I found a nurse to get her a new mask and cleaned her up the best I could. My frustration level at not being seen, Jesse throwing up, and me not packing a change of clothes got the better of me.

About 30 minutes later, they called us into A clinic over the intercom. I had asked for them to call my cell phone… maybe reception in that space isn’t good. There they stuck us into a room with no mention of Jesse’s counts.

Finally a nurse came in. I asked her when we’d be seen. Jesse was telling me that she was tired and hungry. I felt that I needed to get her out of there to catch a nap and to feed her. I could be wrong. I did show my butt in telling the nurse I was frustrated. She explained the doctor was busy with two other very sick kids. I really do hope they are okay, and I understand they take precedent. However, Jesse didn’t need anything. The nurse could have easily said to us: “Here are her counts. Her ANC is 0. Be careful in public spaces. If she runs a fever, you know what to do? Her red blood and platelets are good. If she acts like that has fallen, just come over and they’ll draw her levels to check. Have a great day.”

But nope I had to see the doctor… who basically told me just that. I understand there are first time parents who need that. And it’s important for them to have that, but I can save them time (and yes her time out of there. She needs it because she refused to speak to anyone there today). I am not going to do something stupid to harm Jesse in anyway. Plus I have unfortunately done this before. I am sure they put a sticky note on Jesse’s file today: “Mom is a a double s.” I wish they would put sticky note on there stating something to the effect that we’ve done this before.

And he was a staff oncologist… so I did a pretty good job of showing my butt to him too. I brought up with him the temperature. He’s reply was that 37.1 was a little over 98.6 Fahrenheit. And I guess as a way to get back at me for stating I was frustrated because I’m sure he was too that maybe one of us had misunderstood.

I could give every excuse in the world, but I shouldn’t act like I did today not matter what. I should have stuffed it down better. I shouldn’t tell them I am frustrated. And we are lucky, Jesse seems to be responding to the treatment. For some reason I have felt angrier this round… I guess the first round I was petrified because of how much pain Jesse was in. Or maybe I haven’t really dealt with this healthily. I’ll figure it out… and maybe my frustration today was not being prepared for throw ups like I should be. Plus I get so tired of being treated like a first timer (and that is bad too because I could mess up and miss something really important that is new from the first time we did this.)

Jesse and I left around 11:50am. Luckily she was still hungry. We returned to RMH, changed her clothes, and headed for West Memphis Kroger. There I got her stuff to make Nutella smoothies and English toast pizzas.

Back at RMH, she choose the Nutella smoothie for lunch and drank almost all of it.

I actually made myself workout this afternoon, and I think that has helped. Tomorrow, I’m going to set her up with her Ipad in the fitness room (hopefully) and maybe run. I really don’t think that will happen. I’ll get to run again when Jesse is better.

Jesse wanted to call her dad several times today. She is having a really hard time with the separation.

Around 5pm, Jesse wanted an English Toast pizza. Not sure if that or the banana got her. At 5:38pm, I gave her Bendryl. She held it all down until about 7pm. Then we lost the battle. It came up with a vengeance everywhere.

As I was taking out the trash, I got the chance to meet a weekend manager for RMH. He and his wife visit frequently, and help with fundraising for St Jude in Virginia! Plus they visit RMH at Christmas to help run the house. Really nice of them to make the over 900 mile trip to help the families here and to do it more than one time a year. And it was really wonderful to run into someone from Va Beach 🙂 If you see any fundraising activities for St Jude in our area or your area, please do help. It is really nice what they do to help families here. We won’t have to pay for the care Jesse has received. RMH doesn’t charge us to stay either.

RMH does call at 9pm and ask how your stay is going. The paranoid side of me wanted to ask if someone was complaining about me or if I was being too loud or if my jump jacks disturbed the people below?

I do feel better now that I have ranted and guilty because Jesse is lucky. She is responding to treatment. The prayers are helping. I guess it comes down to just being exhausted and frustrated about what is going on. Plus missing Mike, Chris, our friends, home, and my cox internet (it’s the nerd in me… I have been spoiled by my internet… so very shallow). Jesse missing out on all the things she should be doing: going to school, playing in the snow, having the occasional virus as if it were no big deal.

For everyone back in VA, if you get snow, enjoy it please 🙂