This morning I woke before the resident came around. I don’t care for this one at all. She seemed surprised that I was awake this morning when she came in. After not telling me anything new, she was gone.

Jesse slept until around 9:30am when I woke her up giving her medicine. She is getting really ornery about taking them, and I have had to threaten to get her in the hold. I can understand the frustration at having to take them because they do taste bad. And in her mind she feels 100%. I keep explaining that right now she feels 100%. If we stop now, she won’t feel 100% in a few days.

The wound care nurse tried to stop by before 9:30am. I asked her to come back later because Jesse was still asleep.

Jesse’s platelets were lower than 100 this morning. With the upcoming placement of stents tomorrow, the doctors want her platelets at or above 100. Her ANC is only at 200. For the surgery to happen, she has to reach 500.

The research nurse for the “Ethel” stopped by to check on Jesse. She brought us the timer. Woo-hoo 🙂 Today is the last day of getting the ethanol everyday. Now she’ll get it every other day.

We hung out waiting for her platelets to finish and for her shot. Jesse has taken to screaming at me before the shot. She yells about wanting to go home and why am I doing this to her. I understand her frustration. After the shot, her personality changes completely.

After the shot, we left the room to check the mail. Then we went to check out the fish tanks and gift shop. On our way back, we met the school coordinator for St Jude. He gave us a tour of the school area. Jesse made a snowman while I filled out paperwork. Her class will meet 3 times a week for an hour starting at 10am Monday, Wednesday, and Friday.

Jesse was excited, but also very worried about where I would be. We assured her that I would in the waiting area doing my work.

We returned to the room. The new attending doctor and fellow stopped by. I like the new attending doctor. Very nice and remembered our oncologist from home.

Then the discharge nurse stopped by. She looked at Jesse’s wounds, which she deemed to be better. She also mentioned the vancomycin would end today. The miropenin will continue until Friday. If we are discharged, the nurse will teach me how to give the antibiotic through her lumin.

Her main oncologist came by. He was very surprised at the change in Jesse. He mentioned that her stent placement won’t happen tomorrow if her ANC isn’t 500 or over. He mentioned that she’ll have an MIBG later this week to see how she is responding. He also talked about her being able to start the next round of treatment later this week, but that he might give her the weekend off. He feels she needs a mental break. I don’t know if she’ll actually get it at the Ronald McDonald House. She really wants to go home.

She also talked a lot again today about being bald. A text from home from Ferfer with an offer to go bald again with her prompted me to ask Jesse if she wanted me and Ferfer to shave our heads and be bald with her. I thought she’d tell me no because of how upset she got when I did it for St Baldrick’s, but she wants us too. So when we get out of here, I am going to find a barber in Memphis to shave my head. It’ll be easier to take care of 🙂

Later on the nephrostomy nurse stopped by. She told us that when the stents are placed, they will leave the nephrostomy bags in place for a day. This is to make sure the stents are working. I am really glad she warned me of this before hand. Think I would have freaked a bit to see them still there after the surgery.

Jesse talked to her sister, dad, and grandma tonight. She is having a really hard time with not being able to get home. I hope that between round 2 and 3, she will have counts enough to get home for a tiny bit. She also got to talk with her great-grandparents and cousins. Unfortunately her temperature is climbing, which intensifies the desire to go home. After getting off the video chat, Jesse balled that it wasn’t fair that Chris wasn’t sick. She has also worried about going to school with older and taller kids. I think this one will get better once she has her first day at the school.

I was hoping to see the optometrist today, but no luck. The antibody has caused her eyes to stay dilated. And they will potentially stay that way for the next 9 months.

Thank you Susan and friend who makes hats. Jesse loves the monkey hat. Thank you Heather and Russ for the box of goodies. Jesse added the yellow flower pin to her hat.

Thank you Ms. Turner for the music goodies and books. Jesse was so excited to see the streamers. Thank you Mrs Carlsen for the “Kiss Me I’m Perfect Book.” We have the “Love you forever” book. And that is what Mike tells the girls every night at bedtime.

Thank you to Susan, Amber, and Brandi for the book of pictures of Jesse. She loves looking at the book. Thank you Jessica for the Barbie and clothes. Jesse has changed the Barbie’s outfit several times 🙂 Thank you Kim, Daniel, and Caleb for the pictures, card, and goodies. Jesse was really excited to see pictures of her cousins 🙂

Thank you John for the dry erase board and create your own books. Jesse enjoys writing and drawing.

Last night Jesse spiked a fever of 102.1. The nurse and I think it was from the IL-2. This is the last shot for this round. After some tylenol, Jesse felt much better and wanted to eat. She also wanted to take Fred the IV pole for a walk. We walked down to the first floor and explored a little bit. Jesse and I found a new back way to the 2nd floor.

Jesse did feel well enough to face time with her sister, Emileigh, Landan, and Melinda later on. Yesterday she’d been very concerned about how people would look at her now that her hair has fallen out. The kids answered her question about her hair perfectly, and Jesse has felt better about the lack of it today.

Around midnight she was ready to go to bed. I suffered some insomnia… and bad judgement in not turning off the TV. Around 3am, I finally used my brain and turned off the TV.

At 8am, the resident woke me up. Not quite sure what the doctors’ deals were today… but sheesh. The resident was impressive. And I mean that with all the sarcasm I can muster. She asked how Jesse was feeling. I told her that Jesse said she felt better. I did mention to her about Jesse’s eyes and wanting to see the optometrist. She then pulled her personal stethoscope out, complained about how cold it was, warmed it briefly, and stuck it on a sleeping Jesse. Jesse stirred a bit. She then asked Jesse, who was sleeping, if that hurt. And this is after I told her about the stethoscope that was warm and hanging on Fred. When I mentioned it again, she commented that she’d pushed on her stomach.

Right after she left the attending doctor and fellow blew in. Not sure what fire was lit under their butts, but they looked at her; mentioned her ANC is up to 100, let me get one question in about how long the GM-CSF shots would last, and flew out of the room. The GM-CSF shots will last until Jesse’s ANC reaches 2000.

Jesse woke around 10am. She instantly wanted to get out of bed. Right as I got her set up, security called me. Someone hit my car. I went down to see what the damage was. There is a dent in the door of my car. Turns out a lady was bringing her 2 or 3 year old son to the medicine room. When she opened the door, the wind caught it slamming it into my car. She could have walked away and not found us, but she tracked down security to let me know. All the while probably worrying too about whatever brought them to the medicine room on a Sunday. I greatly appreciate her honesty. I wouldn’t have probably noticed it.

That was the first time I have been outside in a week. It felt so good. The security guard took me to the medicine room to get her information. I think she was a little concerned that I was going to be upset and nasty to the lady. Don’t think my Harley Davidson sweatshirt helped either. I was a little upset at having to leave Jesse to go deal with this, but in the big picture I wasn’t upset with the lady. She was honest. And she is under a lot of stress too trying to help her son get the care he needs.

Jesse was a little freaked out I was gone so long. She is becoming more clingy the longer we are in here. She spent about an hour this morning crying that she wanted to go home. Crying that she no longer wanted to take the medicine. She also had a moment of this isn’t fair because Chris doesn’t have to have shots every day. All I could tell her was that I feel frustrated about not being able to be home either. I also told her we have to stay and get 100% better.

After this melt down, her whole attitude changed. She asked to go with me to the cafeteria. And once her shot and half of her lumins were ethanol locked, she walked all the way to the cafeteria and back.

She has eaten half a hot dog and some fries today. Figure that she’ll get really hungry later tonight 🙂

Her blood counts are hemoglobin – 8.7, platelets – 57, white blood count – 0.7, and ANC is 100. Jesse might be released when her ANC reaches 500. I’m not 100% sure. If Jesse’s ANC gets high enough by Tuesday, they will take out the nephrostomy bags and put in stents. I am praying that this surgery happens. It will be nice for Jesse to be free of the bags.

Around 10pm last night, something clicked inside Jesse. She wanted to play and was wide awake. Plus she was hungry. We face timed with family in North Carolina around 1am. A little after that Jesse was ready to lay down. She has been trying to avoid spending time in that bed, and I don’t blame her.

Around 10am we both awoke. I remember the resident talking to us sometime around 8am. Jesse woke up worrying about the 2 shots for today. The nervousness of waiting till 12pm for the IL-2 and GM-CSF shot messed with her appetite. But once the shots were done, she ate an entire container of Lucky Charms. She also ate half a snack bag of pretzels. Hopefully this will keep the nutritionist at bay. Her weight did go down .1kg (.22lbs). The good news there is we are done with IL-2 shots until next round.

Jesse has been saying her pain level today is a 2. This is great because we’d been staying at an 8.

The infectious disease doctor stopped by to tell us that we wouldn’t see them everyday now. She will have the vicamycin for her leg and labia for 14 days and mirapen (sp?) for 10 days to treat the E. coli.

The nurse mentioned Tuesday now for the nephrostomy bag removal. I hope it does happen then. It will be nice to have Jesse free of those bags. They have served their purpose.

I have noticed more over the last few days that her vision has become blurry. A side effect of the antibody is causing her pupils to dilate and stay dilated. I am hoping that Monday the optometrist will pay her a visit and get her some glasses.

It’s 3:30pm now, and we haven’t seen a fellow or attending doctor. I am hoping that their not dropping in means Jesse is on the up swing in their book. We haven’t seen the pain team either… or the research nurse for the “Ethel” study. Jesse is on Day 3 of that study. We have 2 more days of them putting the ethanol or placebo in her lumins every day. Then I or the nurse will do it every other day. I was hoping to see the research nurse. According to the doctor, they have a really cool timer shaped like a little old lady – “Ethel”. I want one to take home to keep on the fridge 🙂

We did talk with our family in North Carolina again today. Jesse is more interested in watching her Ipad today. She did have a breakdown moment of wanting to go home and for things to return to normal. I wish everything was normal again too, but I explained to her that we have to stay here and get this done so it can be normal again. She has also worried about her lack of hair quiet a bit today. I told her she is gorgeous with or without hair. And luckily the family in NC told her the same thing when we talked. Thank you guys!

Blood counts today: Hemoglobin – 8.7 (I will be surprised if we don’t have a transfusion of red blood tomorrow), Platelets- 103, ANC – 0, but White Blood Count – 0.6. This increase is a good sign. Hopefully her ANC is getting ready to make a reappearance.

I have enjoyed the quietness of today. And hopefully that will help Jesse too.

Last night Jesse started the “Ethel” ethanol study. For her white line .5ml of fluid was put in her lumin and left for 2 hours. To make sure Jesse was ok, her vitals were taken ever 30 minutes. After 2 hours, the fluid was removed. New fluid (.6ml because the red lumin is larger in diameter) was placed in the red line and left for 2 hours. And again vitals were taken every 30 minutes.

Jesse did well, sleeping through most of it.

This morning at 7am the fire alarms going off woke us up. Turns out the maintenance team was working on the heat. Since I was up, I grabbed a shower and started a load of laundry.

Jesse felt like eating a milkshake this morning. She also didn’t want to be in the bed at all. She has wanted to sit in my lap all day.

At 9am, the resident came in. She told me the ultrasound yesterday didn’t show anything that the doctors were concerned about. And her CRP (a number infectious disease doctors watch) went from 15.8 yesterday to 5.9. The night nurse had let me know before she left, Jesse would need platelets. Her hemoglobin is 9.0. Her ANC is still 0, and her white blood count dropped to 0.3.

Her main nurse practitioner stopped by to check on Jesse.

The platelets came around 10am. Platelets don’t take long to transfuse. And as they finished up, her Child Life specialist stopped by to give Jesse a doll she could draw on. After Jesse drew a face and clothes, the specialist showed her medical tools and bandages she could use on the doll. Jesse opted to place a line in her doll’s arm.

Jesse used the bathroom right before her shot. Unfortunately she grossed herself out and threw up. Right after I had gotten off the phone from ordering her pasta with tomato sauce. She did eat some of it.

When she was cleaned up, it was time for her GM-CSF shot. She is really over getting shots. And sadly this isn’t going to get any easier.

Afterwards I ran down to grab a bite of food. When I returned, Jesse’s main doctor stopped by to see her. He mentioned a PET Scan with CT scan when her counts return. A PET scan is an potential hour test where they put radioactive glucose in her veins. The active cells in her body will take in the glucose, which lights up in the scan. But this won’t tell us the difference between tumor and infection.

As he was talking to us, her infectious disease doctors stopped by. They told me that Jesse had a strain of E. coli that was resistant to most antibiotics. They asked if she had diarrhea. If she did, then they were going to recommend putting her in isolation. Luckily Jesse didn’t have diarrhea today. So she gets to stay in 2064… and they are removing an antibiotic. Also helping her to stay out of isolation is that her E. coli responded to mirapenin (it’s an antibiotic… not sure of spelling). This has given her negative for infection cultures the last 2 days.

Then the attending doctor came in while the other 4 doctors were in the room. They conferred about Jesse. Then the 4 doctors left while the attending examined Jesse. Then he headed out just in time for Jesse and I to face time her class at Norge.

This really lifted Jesse’s spirits. She has been starting to get really homesick. She loved watching her classmates dance. And I really appreciate them allowing Christine, Emileigh, and Landan say hello. Seeing everyone made Jesse want to start the school program here. She had been telling me earlier in the day she didn’t want to go to school here. I think she has it in her head that I will be separated from her during school time.

Our time with them was interrupted by the “Ethel” study doctor stopping by. He was coming to see how Jesse did with the first round of the study. He is a really nice guy and took the time to say hello to Jesse’s class.

After he left, the social worker stopped by to see how Jesse is doing.

Around 3pm, a volunteer stuck her head in the door to invite Jesse to paint a clay bank. I know that people mean well, but I wish she’d talked to the nurses first to see if Jesse could go paint. I checked with Jesse’s nurses to make sure Jesse wasn’t on any precautions or restrictions since she had the E. coli. Jesse wasn’t. And when they removed the ethanol (or placebo), Jesse walked down to paint a unicorn.

Afterwards she rode Fred the IV pole to patient services to get the mail. Thank you Team JoJo for the care box with the DVD, hat, flashlight, Doc McStuffins coloring pad, and other goodies. I have a picture and I’ll send it to you tomorrow. Thank you John, Beth, and Alex for the unicorn, Pegasus, fairies, and hat. I have a picture for you guys too of Jesse in the hat. The hat you made is amazing.

Around 6:30pm, I told Jesse I was going to the cafe to get dinner. She started crying because I was leaving her. I finally got her to understand that I would be gone 10 minutes at most. Separation anxiety seems to be the theme today. She has sat in my lap most of the day. Tonight I can’t get her to lay down in her bed because she is determined to sleep with me in this chair… which absolutely can’t happen because of the nephrostomy bags. I absolutely do not want to be responsible for pulling those out.

The doctors also increased her pain medicine tonight. Jesse seemed to have more pain in her right leg today. The pain doctors will be consulted starting tomorrow to see what we can do to help Jesse feel like walking on that right leg.

I’d like to thank Ginnie Green, Mrs Carlsen, and all those at Norge involved in setting up the face time with us today. And thank you to the Ms. Turner for letting the kids call Jesse during music centers. Jesse is telling me she really wants to do that again. I do too 🙂 Thank you again.

Last night we had a nurse in training and her know-all-better-than-you-don’t-have-kids trainer… I know they need to learn, but there is something that makes me ubberly nervous with them involved. I know there are those out there that would say just request her not be your nurse. Yeah done that before… here’s how it works: they all are buddy buddy. You aren’t their buddy, they talk about you where they think you can’t hear them. Then the new nurse is really sweet to your face. (Learned that in PICU a few years ago when I requested that the nurse who didn’t give a crap over Jesse’s falling respiratory rate not be our nurse again.)

Hopefully she’ll “graduate” to another patient soon.

Jesse slept in till about 8:30am. She woke up this morning complaining of pain in her left side. The resident came in to see her, but Jesse really had to go. So the resident decided to come back later. The fellow doctor for infectious disease arrived. He told us that Jesse had E. coli in her tube. The good news is that the blood taken yesterday from her CVL and arm show no bacteria growth today. This means the antibiotics have taken care of the E. coli. The clinician came in while I was dressing Jesse. She got her weight: 16.6 kg (36.5lbs).

The other good news today is Jesse’s white blood count rose from 0.1 to 0.4. Her platelets are at 61, hemoglobin is 9.8, and ANC is still 0. The nurse explained that when white blood count starts to rise, ANC will start to show up.

Then the wound nurse showed up. She wanted to change Jesse’s wound bandages. I requested that they redo her nephrostomy tube bandages too. Right now the plan is to try to place stents on Monday if the tumor isn’t blocking the ureters too badly.

While Jesse was laying on her tummy having all this done, she lost it. She was wailing to go home. The nurse called Child Life to come. They all meant well, but they were coddling Jesse in trying to console her. And with Jesse that just makes things worse. Finally I said to her, “Listen to me.” So far this is very effective in getting her to calm down. I asked Jesse if she wanted to go home long term and grow up or go home to get sicker and lose the ability to be there to grow up. Harsh, yes. But this is the reality of what we are fighting. After this question, Jesse stopped wailing. And actually started smiling and playing with the Child Life specialist on her Ipad. The nurse (whom I love to pieces… she is just awesome) came in to let us know the doctors had scheduled Jesse for an ultrasound of her belly and a PET scan. Both are because of the pain she complained about this morning in her left side.

After finishing the tape changes, Jesse actually wanted to take a walk. Do you think that got to happen? (It’s been one of those days where everyone has been in and out of our room all day long).

The resident caught us at the door. She examined Jesse standing up. The discharge nurse caught us to warn me that since Jesse was 1kg (2.2lbs) lighter than when admitted the nutritionist would be coming by. And that she was going to advocate for TPN, IV nutrition. I don’t want her on TPN at all. For one, TPN can grow bacteria in her line (don’t need that), and two it’s not good for her liver. I am very thankful that she warned me this was coming down the pipeline.

While we were talking, Jesse asked for a wheelchair. I had Jesse tricked into walking to the gift shop when the ultrasound ladies wheeled their machine up. They had been in ICU doing an ultrasound, and it was convenient for them to stop by then. So much for the walk.

I talked Jesse into ordering food while they scanned her belly and back. It didn’t take them long, and as they finished her food arrived. Jesse ate 3/4 of a slice of pizza. Then she played with her dollhouse on the floor. As she was playing, I decided to reorganize and rearrange the room. This room is small.

As I had everything dumped on the floor, another doctor and research nurse stopped by. Thankfully they agreed to return around 1pm. (Plus Jesse was on the toilet… which made them uncomfortable to bother her. Jesse has probably reached the same point all pregnant women reach while in labor. There is no privacy in a hospital.)

The attending doctor and fellow dropped in next. They said the same thing about the ultrasound and PET Scan I had heard earlier. They were happy that her swelling was less.

Then her main oncologist came by. He doesn’t feel that Jesse needs a PET Scan because to him it won’t show the difference in tumor and infection. And he strongly feels that all of what is showing is tumor. And as of tonight, I haven’t heard if we are having a PET Scan or the results of her ultrasound.

Next was the nutritionist. I told her no on the TPN. She then suggested an NG tube down her nose – absolutely not. Luckily the discharge nurse had reminded me about the peractin (cyproheptadine). Good old cyproheptadine. Jesse took it during radiation to increase her appetite. Taking this and increasing Jesse’s IV fluids to full maintenance from half maintenance satisfied her for the moment. Jesse took her first dose of cyproheptadine at 3pm today… and by 4pm she’s out. Hopefully in the next few days, she’ll get used to it and not be snowed 🙁

Plus we switched her pain medicine to oxycodone late yesterday. I think this has made a significant change in her mood. She has been smiling and laughing today more than I have seen in weeks. And she climbed into the big blue chair in our room by herself.

Jesse was supposed to have her IL-2 and GM-CSF shot at 12. We asked her how she wanted it – she choose straight again. Amazes me. The nurse went to get it. Thank God she pays attention. She noticed it was expired, and let me know she’d contacted pharmacy to send up a new one. By 1pm still no shot.

At 1pm, the new doctor and research nurse arrived. Since Jesse had E. coli in her CVL, she is eligible for a study called “Ethel”. This is a double blinded randomized study to see if ethanol (alcohol) when allowed to sit in the CVl for 2 hours will break up the biomedical film that can develop in the line. Since Jesse has had an infection this time, she is now at an increased risk of getting another infection. And that biomedical film can allow certain bacteria a place to hide and grow.

Jesse’s two shots arrived while I was reading the information for the study. Jesse screamed briefly, then asked to place the band-aids.

I signed Jesse up for the study. If she gets the ethanol, bonus for her. If not, we help future kids. If she doesn’t get it, we won’t know. They will give us saline drawn to look like the ethanol would. The nurse will put this in her line, let it sit 2 hours, remove it, flush with saline, and lock with heprin. They can’t just flush it through because it’s ethanol, and when mixed with heprin it can cause the CVL to clot. If it clots, we’ll have to use TPA to break the clot.

Jesse is either number 53 or 54 in the study. It will not end until 132 kids have been in the study. Results will be released either on St Jude’s website or in journal articles. Jesse will be in this study for 6 months, then an additional 90 days if her CVL stays in that long. If the CVL is removed before 6 months is over, they would like to have it for pictures and study. If the CVL is removed and replaced with a new one, then Jesse is out of the study. They only want to follow this particular CVL.

As the research nurse and I were finishing the paper work, the social worker popped in. She apologized and said she’d come back.

I asked Jesse if she wanted some popcorn. We order her some, but she only ate 2 bites before saying she was full.

About 3pm, the line nurse came to measure Jesse’s CVL to know how much ethanol she’d need for each line. She wanted Jesse to get in the bed, but Jesse refused.

Around 3:30pm, we went down to check the mail. This seems to be her highlight of the day. Thank you everyone who sent cards. Jesse really enjoys opening them and having me read her the cards. 🙂

Around 4pm, she was out. I shifted her to the bed about 5 so I could go grab a bite to eat.

She woke briefly to face time with her dad, sister, and neighbors tonight. Really good to see everyone. She talked briefly to grandma, then was out.

Jesse’s hair is really falling out now. If you do see her anytime soon, please don’t make any comment about it. I have a feeling that this will become a sensitive subject in the days ahead. And it might be best to just act like she has hair and is no different from anyone else. She did tell me she wanted to cut her hair today, but I have no way of doing that here, and don’t know if I am allowed to. If Jesse asks me to shave my head with her, I will do it. But I will wait for her to ask because last time I did it, she wasn’t overly happy with me. And strangely enough the only thing she really remembers from her first battle with cancer was me putting her in the tub and shaving her head.

Good news tonight, we don’t have the horrid nurses 🙂 I really like the nurse here tonight. We are waiting on the ethanol (or placebo) to come up for the first time. Pharmacy and Jesse’s name aren’t mixing well today. They were supposed to have it up earlier, but according to the study doctor, pharmacy isn’t prioritizing his study.

When they do put it in Jesse’s lines, it will have been done one line at a time. She will have to have vitals every 30 minutes. And then 15 minutes after the ethanol (placebo) is removed. The process will take 4 hours and 15 minutes. The nurse is thinking of ways to combine other things so that she cuts down how often she bothers Jesse. I really like her thinking 🙂

Please say a prayer tonight for a family I saw standing in the hallway as I was walking to get Jesse some water and ice. I don’t know what is going on (and don’t need to know). The look on their faces was devastating and so hopeless.

This morning I woke up to learn that Jesse has an infection in her CVL. First one of those I can remember us ever having, even with the last CVL. The stain right now is graham negative; meaning that it is not staph or strep. And until tomorrow, we don’t really know what it is. While we wait, the doctors have removed sephlafin (sp?) and added 2 more antibiotics.

The resident came in before 9am… I returned from getting some breakfast to find her in the room. One day I’ll beat her in being in the room.She talked about Jesse’s pain level. And instead of listening to me, she just wants to up the dose of morphine. I don’t think upping the dose is the answer. I think that Jesse’s body has gotten used to this dose, but I don’t want to snow her. If she wants to be awake, I want her awake.

I noticed that Jesse started shivering right after the resident left. I asked for her temperature to be taken: 98.2. But I had a feeling that it was going up, and by the end of an hour: 102.6.

The nurse came with Jesse’s medicines. She asked me if anyone told me about Jesse’s ultrasound, which they hadn’t. Luckily the ultrasound showed no clots. She also told me that Jesse’s platelets are around 40, which is considered low. Her hemoglobin is 9.7, and her ANC is 0.

The attending doctor and fellow came in to see her. He mentioned the added antibiotics and that they wanted an xray to make sure something else wasn’t going on.

She wanted to go see if the gift shop was open. Since we didn’t have a wheelchair, Jesse had to walk from her room to the elevator. And when we found the shop was closed, she had to walk back. Jesse mentioned that her leg hurt. When we returned to the room, she asked for an ice pack for her leg. On her walk back we waved at the attending and fellow, who were suiting up to see other patients.

The platelets were ready to be transfused when we returned. Jesse played a game while waiting for them to complete. She also asked about her GM-CSF shot. We asked her if she wanted it with LMX, the J-tip, or straight. Jesse opted for straight. I don’t think the J-tip and LMX really work for her. Plus she kept saying she’d rather get it over with. She did scream with the shot, but once again recovered quickly to put the band-aid on.

The new infectious disease team came by after lunch. They talked about several things:

The new antibiotics Jesse will be taking
Asked when her latest MRI was. They want to look at it to see what they think. They did think Jesse didn’t need an xray.
Discussed what type of bacteria this might be. It could be bacteria from her gut that grew more with the suppression of other bacteria due to the antibiotics. It could be a type of bacteria that likes to grow in the line. This type is hard to get out of the line. And this might mean a removal of the CVL.
Getting a new blood test using a line in her arm or hand to see if the infection is in the blood or in just her CVL. If it just in her CVL, her chances of having the CVL removed are increased. They have found that bacteria is very determined to stay in the CVL with little effect on it from antibiotics.
Possible entry into a double blind randomized study for using ethanol (alcohol) in her line. They have found that when alcohol is dropped into a petri dish, it kills the bacteria. It is at times more effect than the antibiotic at breaking up the bacteria that wants to live in the CVL. It will only be enough alcohol to stay in her CVL. If it does get pushed into her body, it’s not enough to make her drunk.
Trying to determine if she will have 6 months of antibiotics versus 6 weeks of.
And because of the infection, new fevers, and lack of ANC – the operating doctor isn’t comfortable putting in stents… Not sure if the stents will be placed next week or when her ANC returns, which could be another week or 2 from here.

After they left, the nurse and I loaded Jesse into the wheelchair to head to xray. After a quick two pictures, we headed back for Jesse to check out the jukebox on the covered porch.

We returned to the room when Jesse’s leg started hurting more. The nurse and I talked about the resident ordering Jesse morphine every 3 hours versus 4 hours. She had tried to tell them in rounds this morning that Jesse needed to try another pain medicine. We both think that upping the morphine will just snow her, not really help her.

This afternoon the nurse told me she has gotten them to agree to let her try oxycodone. And unfortunately they had ordered the blood draw from her arm too. We told Jesse, who was far from pleased about it. She accused us of not telling her, but we told her as soon as we found out it was going to happen.

Getting the blood from Jesse’s arm wasn’t easy. She became very upset, and the more upset she got, the more her veins hid. We tried her hand first with no luck. The nurse was successful in getting it from her arm. They felt awful they had to stick her again, and I am sure Jesse screaming “Mommy save me” as I held her in my lap didn’t help.

Now Jesse is up coloring. She is complaining that her thumb hurts on the inside. Not sure if that is pain related to her GM-CSF or from the attempted blood draw. Her wounds on her back do look better. One of the dressings came off. Instead of bugging the nurse, I replaced it the way they had shown me.

Jesse has also been pulling out her hair. What she isn’t pulling out, is falling out. I will give her credit. Even with all the medicine and upset of the day, she is wide awake. And not showing any signs of slowing down.

In 3 hours Central Time, 2014 will be here. As we close out the year, Jesse is decorating her fireman’s hat she got today. She has been busy adding stickers for about 30 minutes. She has explained every sticker she has placed.

She also has not had a nap at all. Normally Jesse doesn’t nap anyway, so this might be a sign she is feeling better. She has been freaking me out in her sleep. Last night she did a lot of jerking and twitching. And the other night she woke us up saying she was scared in her sleep. Tonight she has told me she loves me several times and thanked me for bringing her here. All of it messes with my head…

I woke at 8am. Jesse was up about 8:30am. While I grabbed a quick shower, she watched something on Disney. I noticed the resident examining her as I put my stuff back in the parent room after the shower.

At 9am, her nurse came in to give Jesse her medicines. We asked her if she’d like to have her taped changed around her CVL before or after her shots. Jesse opted for the tape change right then. The betadine makes a big difference for her. No rash underneath, no screaming while we used it to clean where the tape would be placed. In 30 minutes, we were done.

The nurse returned to tell us that the doctors had ordered an ultrasound of her leg to make sure she had no clots. This time the technicians asked if Jesse could come to their office in Chili’s Care Center. We worked it out to where Jesse could go after doing the craft at 11am.

Before we left, the attending doctor and fellow came around. They felt the swelling in Jesse’s leg and labia had improved.

Jesse found the ultrasound to be very uncomfortable because they were having to press on her right leg. I think she was also miserable because her temperature was climbing. When we left for ultrasound, she was running 100.6. When we returned, she was 102.2.

We returned to the room for her shots and platelets. Jesse’s ANC is still 0. Her hemoglobin was 10.1, and platelets are 21. With platelets being 21, she was due for a transfusion.

Jesse opted to have both the IL-2 and GM-CSF shots straight; no numbing medicine. She did scream as usually, but barely cried. Instead this time, she wanted to place the band-aids on her shot areas.

After that, they started her platelet infusion.

At this time the social worker popped in. I had promised Jesse a drink for doing her shots so well. Jesse asked the social worker to stay with her while I ran to the cafeteria.

When I returned, the social worker left to see other patients.

For about an hour, it was quiet. The child life worker assigned to Jesse brought her some stickers and a book. She told us that child life was leaving at 3pm today for the holiday.

With that knowledge, I wanted to make sure I checked the mail before patient services closed. Jesse wanted to come along. As we wheeled Fred out of the room, we realized her wheelchair was gone. This actually was a good thing because I tricked her into walking to the elevators. Extra clean wheelchairs are kept in the main lobby. We snagged one and rode down to patient services. Jesse was excited to get cards from her cousins. Thank you Carol and Dorothy 🙂

As I was returning a call, the psychologists showed up. Never fails… get in the shower, middle of a run, return a phone call… someone interrupts me. Then the times I would like for someone to interrupt me… nothing. I must put out a vibe… need to tweak the vibe 🙂

She talked about Jesse’s needle fear and was impressed that Jesse doesn’t move. After talking about it for awhile. She left. I made my phone call, and got to talk for about 30 minutes before being interrupted by the infectious disease doctors.

We talked about the infection and how the antibiotics are working. Unfortunately when Jesse’s ANC does return, it is going to possible trigger a great deal of pain in that infected leg. I did tell them Jesse complained about her bone hurting. He mentioned that the doctors will probably order another MRI after her ANC returns. If the MRI shows certain things like pus, they will treat the abnormality in her femur as infection. This means 6 months of antibiotics. I’ll take it.

When they left, it was quiet again for a bit. Jesse acted like she was going to doze off, but hung in there.

I have noticed today her appetite is better. She actually ate half a blueberry muffin.

Around 4:30pm, Jesse was finally able to go #1 without issue. Afterwards we headed down to check for packages. I have ordered a cutting board to use an a mobile desktop. It wasn’t there yet, but we did have a package. Thank you Elaine, Cherry, Rebecca, Christian, Ann, and Jamie for the box of goodies.

The day nurse returned around 5pm. She asked about Jesse’s leg. I think that she is thinking the morphine is not really having an effect on Jesse’s pain with the leg. I have asked Jesse throughout the day if she wanted morphine or an ice pack. She has been choosing an ice pack. She did tell us that her leg felt better when the antibiotic was going in. Tonight she has actually asked for the morphine with the ice packs on her leg.

The day nurse was going to tell the night nurse to check with the doctors about changing her pain medicine since it hasn’t been as effective. I inserted foot in mouth by wondering aloud if it was the know-it-all nurse for tonight. Ah well… I’m tired and who doesn’t have moments. Luckily for us, we have one of our favorites. She is super sweet. I have liked the nurses we have met except for the know-it-all.

Jesse’s eyelashes are becoming an issue. They are falling out, and it doesn’t help that she’s a picker (no idea where she got that gene from…) I wonder if she is knocking the eyelashes into her eyes messing with it.

I am starting to have issue with the constant in and out of people. I wish I could schedule them all instead of just the dropping in. That way I know when to expect this professional or that, instead of feeling like I am “molding” around waiting for them to arrive. Plus then I could schedule them around activities Jesse wants to do. We were able to work things out today where Jesse got to do the craft, but she couldn’t stay long due to the ultrasound. Friends are different. They won’t make me feel guilty for stepping out for a moment. Sometimes I feel like the professionals look down on me. (More than likely all in my head). Plus then I could determine good times to do my work and return messages without being interrupted.

And the one person who was actually scheduled to show up… never did. Amazing.

Tonight Jesse’s temperature is 100.1. She has been shivering, which may mean the fever is rising. Her main doctor here feels the tumor is the cause of the fever. He keeps making the same comment about the size of it. (Sadly it is now 102.1)

Jesse has finally zonked… 3 hours left in 2013. Not all of 2013 has been bad, but it has definitely had aspects I don’t want to ever repeat. I’d like to repeat all the camping trips with everyone. I’d like to repeat our time together as a family all in one place. Here’s to hoping that 2014 brings Jesse and all kids fighting cancer (and actually anyone fighting cancer) a definite cure.

Flurries here today. Crazy that you miss so much of the weather being trapped in here. It wasn’t until a nurse told us that we knew it was snowing.

Also crazy that everyone hits your hospital room at about the same time… feel a little overwhelmed by it at times.

Jesse woke me at 5am wanting a drink. I was so out of it I thought it was Chris yelling for her daddy… and I was getting ready to yell at her before I realized what was happening.

Around 8am, Chris was up and ravished. Mike and Jesse slept until about 9. I had a staff meeting at 9, which is when the resident showed up. Different resident this time. I didn’t even get a chance to catch her name. That is frustrating to. Yes I have dropped everything to be by my daughter’s side. Please understand if I would like to continue to work. I need a sign for the door! “Staff meeting, Monday’s at 9am. Please wait until 10am before seeing us. Thank you. The patient’s parent inside.”

Thought about this a little more after I wrote it… I don’t mean that I wouldn’t drop everything for Jesse. I’ve done it before. But when you are here, you are constantly interrupted. I just want 1 hour to keep up with some aspect of my life outside of Jesse’s illness. And for that hour I have the meeting in the same room with her. I don’t go off and leave her.

Mike grabbed a shower while I finished my meeting. Then Chris and I went down to grab us breakfast.

The clinician came to tell us they were doing a craft on the porch when the wound care nurse arrived. She looked at Jesse’s wounds and was pleased that they looked much better. After she redressed them, we put Jesse in the wheelchair and rolled her out to “covered porch” to do a craft.

When the craft was done, Mike and Chris only had 30 minutes before they had to leave for the airport. And as they were telling us good-bye, the attending doctor and Jesse’s main doctor came in. The attending decided to return later while Mike met her main doctor.

It was hard watching them go. I don’t know when we’ll all be together again. Plus Jesse and I are homesick too. We miss our Maggie dog, backyard, house, friends, family, school, Williamsburg, Virginia, and the normal boring routine of everyday life. I miss getting the kids up in the morning to go to school. I miss cleaning my house… I miss my shower… I miss not having to share my washing machine (conceited of me I know… but once you can just do laundry at a whim and be lazy to leave it in the dryer overnight… you get ruined.)

I miss being aggravated by dueling TVs and Ipads. I miss hanging out with Mike and telling the girls to go to sleep… and Jesse getting fixated that she going to sleep with me. And me waiting her out sometimes and caving other times. I miss braiding Chris hair to make it “curly” for school.

After they left, Jesse felt like she had to pee. She sat on the toilet for 2 hours and no luck. I talked her into finally getting off to go with me to check the mail. But when we got back, she felt the urge again… and sat for another 90 minutes with no luck.

Thank you Jennifer Hewitt for the coloring books, pencils, cards, and singing card. Thank you Howard family for the coloring books, sticker book, and cards. Thank you Dan and Suzanne Hetts for the snacks, CD, and Jesse’s tote (that will be very useful). Thank you Nancy and Robert for the card. Thank you John, Beth, and Alex for the “Magic Tree House” books. And thank you Yatzeck family for the USB drive. Jesse was exhausted after we opened mail and fell asleep.

Thank you everyone for the cards that you sent. Jesse really has enjoyed opening them.

In the middle of the night, Jesse needed to go #1. As I was getting her up, I noticed that her left nephrostomy tube was tinged red. Mike and I called the nurse. She called the doctor, and he requested a urinary analysis. He mentioned that the tube could have shifted in the kidney. Or Jesse could have a blood clot in there. Either way it sounded like he felt the tube needed to come out.

We all went back to sleep. By 8am, Christine was begging to go eat. Jesse woke up asking for hot chocolate (and on the day the machine was broken… then looked fixed but still sounded funny.) After breakfast, we waited around to meet with the doctors.

The radiologist nurse was the first to stop by. They had obviously talked about removing the nephrostomy bags. In their place, they will put stents in her ureters. I had many questions because of our dealings with a urologist two years ago. I asked her if we’d have to replace them every 6 months. Would she have to live with them forever? What risks to her?

Right now the stents will be placed on Thursday. The nurse said this needed to be done because the bags are only supposed to be a temporary fix.

The nurse was honest that we needed to ask the nephrologist. But we do need to take the tubes out. I do agree that the stents would be better than the tubes because we wouldn’t have to worry with the bags. Or the tape on her back that has torn it up.

As the nurse was leaving, the infectious disease fellow returned. She looked at Jesse and felt the swelling was less in her knee and thigh, but she warned this might change when the neutrophil return.

She left, and was followed by the fellow and attending doctor. They felt that her swelling looked the same.

After they left, the infectious disease doctor came in and said the same thing the fellow said. But he did say she’ll have another MRI after her ANC returns to check for abscesses. This will lead to potential surgery.

When they left, I suggested that Chris and I go check out the Ronald McDonald House after Jesse got her IL-2 and GM-CSF shots.

It is not far at all the RMH (Ronald McDonald House). And it is really, really, really impressive inside. We have a room on the 2nd floor that is bigger than this hospital room (although that wouldn’t really take much… it’s about 150 square feet if that). I think once Jesse gets better, she’ll really enjoy it. They have playgrounds and lots of toys.

Chris and I returned, grabbed Mike and us lunch. Afterwards we began asking about what we needed to do to donate blood for the natural killer cell test. This test will see who has the better natural killer cells to help Jesse. I figured that Mike and I would have to register for medical numbers here. I had tried asking registration yesterday, but they looked at me like I was nuts.

The nurses did a great job helping us get everything in order. They contacted the medicine room, which offered to draw the 2 viles of blood from each of us they needed today. First Mike and I needed to go register for a medical number. As I had feared this took some time because the ladies didn’t know what I was talking about. We finally got it straight.

Then it was off to the medicine room. Jesse was very excited to come along and watch us get poked. Afterwards they each got to pick a toy out of the treasure chest.

I am so glad they let us do the blood draws today versus tomorrow morning at 7:30am. It would have been crazy especially with Mike and Chris needing to leave at 12 to head to the airport for their flight home.

When the blood was drawn, we drove Jesse and Fred the pole to the cafeteria to get popcorn and drinks to have a snacking dinner.

In the room, Chris and Jesse played with the doll house for a bit. Play stopped when Jesse started shivering really bad. And by 7:30pm, she is running a fever. The day nurse and I discussed that we feel the IL-2 might be causing the fevers. This is a side effect of the shot, and Jesse has spiked fevers each night after the IL-2.

Thank you everyone who sent cards. Jesse enjoyed opening them the other day. And they helped brighten her day. Thank you so much 🙂

Mike and Christine arrived a little after 8pm CT last night. Jesse woke briefly to see them, and then was out again.

Mike told me about a very nice lady that helped them on the plane. Her sister had been a patient at St. Jude. I am very grateful for her help and kindness. It means so much 🙂

Chris and I slept on the little couch in the room. Mike took the recliner. Yes Chris and I could have gone to the Ronald McDonald House, but it felt so good to be all together.

In the morning, the infectious disease doctors stopped by. They warned us that even though Jesse’s swelling looks better it might get worse again when her neutrophil return. The floor doctors came in and said the same thing. I am just praying that most of this is infection, and while it will get worse… it will get better.

Jesse’s ANC is still 0. And her hemoglobin dropped to 7.4. Her platelets are at 130.

After her morning medications, the nurse started her blood transfusion.

With Chris being here and running all over the place, Jesse has decided that she’d like to get up. We had to wait for the blood transfusion to finish. During that time we got Jesse to eat fresh popcorn.

We put Jesse in the wheelchair when her transfusion was done. At the “cover porch”, Jesse got out of the wheelchair and walked around for a little bit. Then she walked back to the play area.

We have toured the hospital when she and Chris were done playing. Jesse showed her dad and sister Chili’s Care Center where they do the imaging and radiation.

This afternoon she sat and played/ fought with her sister.