Our nurses last night didn’t leave a great impression on me. It was one nurse training another. I understand that they are trying to make an effort in society, but hi I live with her. I gave birth to her. I don’t mistreat her in anyway… please stop by my house, you will see that while we are lower middle class, we don’t live in squalor and I don’t ignore either of my girls.

The trainer nurse came in with her trainee around 7pm. Immediately she starts telling me everything that I already know from that day and not entirely getting it right. And when I would try to correct her, she would interrupt me. I quickly got the feeling that she was a know-it-all that always has to answer for everything… and even answers when no one is talking to her and directly asking the question to someone else. And most of the time she is wrong, but in her head she never is. Detest.

Her trainee started taking the whiny tone with Jesse. Meaning in a whine she would console her that is was okay when Jesse whined over taking her medicine. I can’t stand whining. And I when I would tell Jesse that she must take the medicine… she would undercut me with the whiny “It’s okay.”

I know I am tired and my fuse is getting shorter and shorter, but please do not undercut me with my own child. It is beyond rude especially when I am trying to keep her disciplined. And Jesse is quick. Her manners went flying out the window and everything turned into whine central. And with Ativan on board for nausea and with her exhaustion, I couldn’t get her to stop whining.

About 8pm, Jesse had to pee. And for the first time she went rather quickly. I wonder if she is having to overcome some discomfort to go.

Jesse finally passed out about 9pm. I laid down to go to sleep shortly after.

I woke up almost every two hours because the nurse dumping Jesse’s bags had to flush the toilet. I haven’t heard any of the other nurses do that. And then she would come in to give Jesse morphine on the every 4 hour mark. Of course because she’d been a whiny butt… she couldn’t get Jesse to take the medicine. Jesse had figured her out quick and knew she wouldn’t push the issue. I’d tell her open up, take the medicine, and down the hatch it would go without the drama. (still fuming)

At 7am, the know-it-all returned to tell us we had an MRI. Pretty sure I didn’t forget. She also need to draw labs because the night doctor forgot to order them. I need to remember to remind the nurse tonight to tell the night doctor to see if she needs a CBC.

Luckily they were going off shift and the day shift arrived. The nurse we have today, I really like. Very intelligent and talented. And includes me in the discussion instead of talking to me like I am incapable parent and ignorant soul.

About 7:30am, we headed to MRI in the Chili’s Care Center. They assessed Jesse to make sure she had no metal because of the MRI being a magnet. My least favorite anesthesiologist came in to assess her too. He mumbles and then gets frustrated when I can’t understand him. Either that or my hearing is going. Everyone else this morning in MRI has been very nice.

The technicians became very concerned over the tubes in her ears. They called the doctor to come down and make sure they weren’t metal. I didn’t even bother to tell them they were blue plastic ones. I get the impression here that some employees think most parents are just muddling through their kid’s diagnosis with little interest in what is happening to the kid. Or the ability to pay attention. (I keep sounding very bitter today… trying to work through it… ) And they probably see it so many times.

The resident was the one they sent down. I forgot to mention to her about the morphine and Jesse. Hopefully the day nurse yesterday left a note for the day nurse today and it didn’t have to go through the fabulous nurses we had last night.

They had me go through a metal detector before going with Jesse to the assessment room where she was put to sleep with propofoll. She didn’t take long to fall asleep, and I left to wait the 2 hours for her MRI of her pelvis and femur to be completed.

I am concerned that it will show tumor in the bone, but praying that it just shows infection.

By 11AM CT I was getting concerned about getting Jesse’s IL-2 and GM-CSF shots. She has to have the GM-CSF shot at almost the same time everyday. We started at 11AM yesterday. There is an hour grace period.

I decided to call her nurse to get her opinion about how to handle the shots since Jesse was in MRI. She offered to come down and give Jesse her shots when she got to recovery. I like her. She rocks!

Turns out that she didn’t have to come give Jesse the shots in Diagnostic Recovery. And by 12:46pm, Jesse had both the IL-2 shots and GM-CSF. Even though she didn’t want to take them, she did hold still for us today.

Our next visitor was the wound care and discharge nurses. Jesse has a few spots appearing on her back. We think that the Cloroprep used to clean her skin lead to blistering under the patches holding the nephrostomy tubes in place. They changed her tape while I held her on her side. They also put some camoseptin (Sp?) on the sites. Hopefully that and the vicomycin will help her out.

The infectious disease doctor visited about 3pm CT. The MRI shows that something is in her femur. The radiologist can’t tell if it is tumor or infection. The MRI makes hydrogen atoms bounce around using a magnet, but unfortunately doesn’t tell us if they are bacteria or tumor. I was concerned about this because the neuroblastoma is in the bone marrow. The femur isn’t far from the site they biopsied. Plus we already know its in her bone marrow. It is still depressing to think that this is all happening to her.

He also said that they saw a lot of infection in her pelvis girdle and leg muscle. The good news is there are no abscesses to have surgically checked. I have noticed that her labia looks less swollen today. And she seems to be walking a little better when I tricked her into walking around the bathroom in MRI.

The doctor did say that when Jesse’s neutrophils return she might experience a great amount of pain from the neutrophil cleaning up the dead muscle and bacteria. I asked about fever, and he said she might and might not run one. Today she has not (knock on wood) gone above 99.6 F.

I wonder if it is tumor in her femur, if Jesse will lose that leg? This is something I will have to ask the oncologist about.

He did tell me that Jesse will be on antibiotics for the fever for at least 14 days, maybe 6 weeks, and if in her bones 6 months.

After he left the attending doctor and fellow came in. We discussed moving Jesse off the morphine pump. It seems that every time she hits the button, she itches. I also don’t want to knock her fully out. I would like for her to be able to get up and be interested in playing.

We decided to keep doing the by mouth morphine to see if that made her itch. If this doesn’t work, we’ll try diluadid. Yes this is in the same class of drugs as morphine, but maybe just maybe it won’t make her itch. The fellow also talked about reducing her Benedryl amount to where it still covers nausea and itching, but not knock her out.

When they left, our nurse came in with platelets. Jesse’s hemoglobin today was 8.2 (I think she will have to have red blood tomorrow…it dropped from 9.1 to 8.2 in a day). Her platelets were 61; the doctors want her to stay above 75. Her ANC is still 0. They will not release her from the hospital until her ANC is above 500.

Like I keep telling them, we aren’t going back to Virginia soon… I would rather stay here and get her better (would love to use the word cured. And I am praying there is a day I can say that with her still growing and living.)

Mike and Christine are on there way, and should be arriving in a little over an hour. I hope seeing Christine motivates Jesse to be out of bed. Thank you Melinda, Emileigh, and Landan for sleeping with Maggie so she won’t feel lonely. I wish she could have come too, but I am not sure how she’d have done on the flight. It was good to call home and hear her bark last night.

Well just now Jesse has a fever of 101.2 F… bummer.

Once again Jesse and I were up at 1am and 3am trying to pee. No luck and since she was falling asleep on the toilet, I would only let her try for 45 minutes before telling her no more. At 3am she was successful with #2… which grossed her out badly. Amazingly she didn’t throw up.

Morphine can give the sensation of having to pee, and I think that was some of the trouble.

I felt like our nurse was in and out all night long. Might just be the exhaustion making me think that. And I am not upset with her, she is making sure that Jesse is okay 🙂

At 7, Jesse was up. This time she was successful with peeing. Around 7:30, the resident who can’t look me in the eye came in. She is nice, she is trying to become a doctor, but sometimes certain residents get the best of me. And especially ones that haven’t figured out how important communication is.

She did tell me, while talking to the wall, that they wonder if Jesse has an infection. They also wanted to discuss in rounds her rash on the right elbow and right chest area. They are trying to determine if the vicamycin or morphine is causing the rash to be more pronounced.

When she left, Jesse dosed back off. I stepped out to go downstairs for some coffee. As I was headed out the fellow and attending doctors appeared. He discussed with me that Jesse’s ANC had fallen to complete 0. This might be due to treatment, it being in her bone marrow, or the fact she might have an infection. The doctors are leaning towards infection because of the swelling in her leg and right labia.

They have scheduled for the infectious disease doctors to see Jesse today. While we are waiting, they are giving her 2 antibiotics: seflaphin (sp?) and vicamycin. Since there are concerns about the vicamycin causing the rash, they have slowed infusion from one hour to two hours.

It also apologized for us not going home in the foreseeable future. I point blank told him we aren’t going home to Virginia anytime soon. I would rather stay inpatient at St. Jude right now and get her over this hump.

Around 11am, it was time for the first GM-CSF shot. Jesse is no fool… she helped take off where the LMX cream was, and then went into orbit. We unfortunately had to get the clinician to help hold her down. The psychologist happened to be coming by at the time this took place. She offered some suggestions on how to get Jesse to maybe relax. I’d like to figure out something… because having to fight with her to take the shot today wasn’t my idea of fun.

After that Jesse has complained of being cold. She has 3 blankets on her and still complaining. I asked for her temperature to be taken. Right now we are 100.2 F, but I have a sense that she is climbing.

At 12:15pm, the nurse came in to start her antibiotics. She told me that with the vicamycin at 1pm today the pharmacist requested we run it over 1 hour. If Jesse turns red or starts itching, then we’ll know she has an allergy and will be documented in her chart. She will still get the antibiotic, but it will just take 2 hours to run it.

She asked if I wanted her to take “Bob” the pulse-ox off Jesse’s finger. Since Jesse was asleep, I opted with leaving it on. I feel better with it on to know her oxygen level and heart rate. Good thing Jesse was sleeping… if she’d been awake – Bob would have been kicked to the curb.

At 12:30pm, the resident returned. She told me the vicamycin will run over 2 hours. I didn’t even bother to tell her what the nurse said. It would be nice if she’d made the effort to stop by the desk and confer with the nurse before coming to talk with us.

Afterwards the discharge nurse stopped by. She took one look at Jesse and felt that she had topotecan rash. We talked for awhile longer. She mentioned that many kids who get the cycle Jesse just had, have their ANC tank really fast, plus they end up being inpatient until about 3 or 4 days before the next cycle starts. I’m really okay with that. We aren’t going back to Virginia anytime soon… so might as well sit tight.

Around 2pm the research nurse appeared to check in. Fifteen minutes into our conversation, the assistant doctor (I think) to the infectious disease doctor came in. That is another frustration of being in a hospital. They all send mind signals to one another the time they are planning to come… and everyone shows up at the same time.

My meeting with the research nurse was cut short as the doctor examined Jesse and asked me questions about where we live, what Jesse has been exposed to, and other questions. She did tell me that if it was an infection caused by staph, then Jesse is getting the right antibiotics.

After she left, I figured it would be awhile before the infectious disease doctor came to evaluate Jesse. Wrong. Ran downstairs to get our mail and a drink, and he was waiting when I got back.

He looked at Jesse and from talking with his colleague, decided to order Jesse an MRI of the pelvis. We will also watch her CRP levels. I am not 100% sure what those are. But the doctor did tell me they will give them a base line idea of what is going on. Plus the CRP levels don’t change as fast as other levels.

They left to schedule the MRI and talk with Jesse’s primary team of doctors. The fellow and resident came in about 4pm to tell me that Jesse was scheduled for an MRI of her right leg and pelvis at 7:15am. I am very surprised that they were able to make that happen so quick. So nothing to eat after 11pm. Yeah that hasn’t been hard… she has wanted nothing to eat today. And I am not pushing her to eat anything.

Jesse and I opened the cards after the doctors left. She actually livened up for the first time today and really got into it.

Thank you to Uncle Jim and Aunt Terri for the monkey hat and gloves. When Jesse feels up to it, I will get a picture of her in it to you. She hasn’t felt like any pictures.

Thank you to Mrs Edwards’ class at Norge for the wonderful cards. Jesse loves the ornament you sent, and wants to hang it on her door.

Thank you Cupp family for the gluten free goodies. My feet will love you for not making them itch 🙂

Thank you Susan Core for the card. Thank you Betsy Mckenna and Dena Goble for the cards and stickers. I’m sure once Jesse feels better she’ll be sticking them everywhere 🙂

Thank you Goins family for the cards and pictures. Jesse loved the drawing and coloring. And thank you for your offer of help. Mike and I really appreciate it.

Thank you Donna Martin for your card. Thank you Hillary for your cards. Jesse really enjoyed what you wrote, as did I. And I am sure when Mike arrives on Friday, he’ll be moved.

Thank you to everyone who has offered to help Mike at home and myself here. We really do appreciate the offer.

Jesse was exhausted afterwards and fell asleep. Her nurse came in to get vitals around 4:30pm. She mentioned to me that she talked with the doctors and will mention to the night nurse for rounds tomorrow about getting her off morphine. She feels that there is a better pain medicine for Jesse out there. The morphine makes her itch.

I have been trying to tell the doctors this, but I obviously haven’t been clear enough on the fact I want her on something else or if there is something else less itchy for her. Really hoping they will take her word better than mine and give her something else. I do have to say I have really like all the nurses we’ve had on the floor. They are all very caring and devoted to the kids.

Jesse is awake now and watching Scooby-Doo Big Top for the 4th time. I’m glad she enjoys it.

Around 1am Jesse woke up. She asked me to put on Scooby Doo. I dosed back off. Around 3am, Jesse woke me again saying she needed to do #1 and 2. It didn’t take her long to do her business.

While she was sitting there she noticed that Santa had come by with a toy guitar and the Doc McStuffin’s doctor bag she has been asking for. Jesse looked at it for a little bit, and asked me to put in on the bed with her. She feel back asleep.

Around 7:30am, we woke again. Jesse’s leg seems to be hurting far more today than other days. About 8am, Santa stopped by with another bag of goodies for her from donors to St Jude. Jesse didn’t really seem to be in to it… and he really didn’t stay very long. Later on Jesse asked me when the real Santa was coming. I told her that the man who came around dressed as Santa was giving Santa a break just like Phineas and Ferb. And this man’s Christmas wish was to help Santa. Jesse accepted that answer and moved on.

She was fairly grumpy this morning. I am not sure if it was due to the pain, exhaustion, or realization that it was Christmas. I felt a little grumpy too.

Jesse kept complaining bitterly that she had a wedgie. I tried to explain that she was so swollen on the right side it is going to feel like a wedgie no matter what. Finally I gave up and suggested just going al natural under the covers.

I went to check on the laundry. Tried to do it last night, but with one machine someone else had the same idea. This morning the washer was free, but they had left a load in the dryer.

The nurse came in and discussed her IL-2 shot. Jesse was so grumpy that she immediately went into orbit over having to have the shot.

About 9am, the doctor on the floor and fellow came in as we were trying to explain to Jesse about LMX cream. We couldn’t get through to her at all… and the doctor seemed slightly testy over his time.

They discussed trying to get her discharged tomorrow. I am not worried about it because we aren’t going home. Plus I can just see her running fevers while neutrophenic… and that will just put us back in the hospital. They talked about getting her a wheelchair today and into it to help with the leg swelling. I told him I would rather stay here because she is going to run a fever… and they’ll admit us. This way I don’t have to run back and forth.

The other concern was her pain management. He has recommended moving her to morphine by mouth. She can still push the button if she needs extra. And today we have needed extra.

He also ordered a count of her blood levels.

Once the doctors left, I asked the nurse to keep an eye on Jesse while I went to move the laundry to the dryer. I had checked on it a half hour after I started it. The other person’s clothes were still in the dryer. This time when I came back (about another 30 minutes) some woman was moving mine and Jesse’s clothes from the washer to the dryer. It took me off guard… and actually ticks me off a tad. I had my room number on the washer. It would have been nice for her to knock and ask instead of just handling my stuff. Or even assuming that the clothes in the dryer were mine.

Jesse wanted to use the bathroom. I suggested putting her doll house together while sitting there so she could play with it while sitting in the wheelchair.

It took her a long while to finally go. After an hour, I asked her nurse to keep an eye on her while I ran to get our laundry before that woman just came and chunked it with that other person’s laundry. Yes a minor stupid thing in the grand scheme of existence. But I was in a grumpy mood from where we are right now.

I returned to the room and putting Jesse’s dollhouse together. Jesse decided she was done going to the bathroom. Unfortunately a wave of nausea overtook her, and she puked in the bed. She got some in her hair and on the tape we just changed last night. I think that I am really going to push for the “sterile dressing change.” The window is plastic with silver and cloroprep in the bandage. If she’d puked on a gauze bandage… we would have had to redo it.

I helped the clinician remake Jesse’s bed. She sat in the wheelchair while waiting. She really wanted to lay down. After remaking the bed, I got a shower cap with shampoo in it to wash Jesse’s hair.

Once that was complete, I put her back in the bed. From sitting up and blood numbers tanking, she was exhausted. The fellow returned to talk about her swollen groin. They are concerned that Jesse might have an infection. She drew a line on her with a sharpie to see whether she is still swelling.

The fellow also mentioned that Jesse’s hemoglobin was 7.5 today (yesterday 7.4). St Jude wants that number to be at or above 8. She also stated Jesse’s ANC is at 200. But they didn’t trust the count because her ANC fell way faster than expected.

She asked our nurse to redraw the sample. It returned with a hemoglobin of 7.7 this time, but her ANC was still 200. Lower than 500 means a patient is neutrophenic. With Jesse running fevers, we will not leave the hospital until Jesse has no fevers for 24 to 48 hours. The fellow also ordered 2 antibiotics to help Jesse’s groin if it does have an infection.

I asked her why the ANC might have fallen so fast. The fellow explained that with the tumor being in Jesse’s bone marrow it too could cause that fast drop. Basically the tumor is hogging bone marrow space, depleting the space for red blood cells, neutrpohil, platelets, white blood cells, and other good blood cells. It could potentially be the medicine too… but we have no way of knowing for sure.

At 11am, the nurse gave Jesse her first IL-2 shot. Hoping that gets her immune system going.

Afterwards Jesse asked for some pretzels and grapes. She ate 1 grape and 3 pretzels.

Jesse fell asleep after the fellow left. She has been sleeping since then on and off. Her fever has also hit 102 F during that time.

At 4, our nurse gave her Tylenol to lower the fever so she can get blood. Unfortunately fever eats blood up. Since then her temperature has decreased a bit. The nurse opted not to give her morphine and benedryl right now because of how drowsy she is. The blood will finish somewhere after 6:30pm CT.

I keep praying that the tumor will be stopped and for a miracle. She keeps talking about wanting to be a doctor like the people here. If she does it great, if not I will not be upset. I just want her to be alive to make that decision. And oddly enough today out of the middle of nowhere, Jesse thanked me for bringing her to St. Jude.

They started the antibody at 8:30pm last night. Turns out that Jesse only made 3 hours through antibody this afternoon. So the infusion will take 5 hours.

I am not upset about it… like we are going anywhere else. The premedication of benedryl and morphine seem to have knocked her out for a bit. I am planning to stay up to keep an eye on her.

December 24, 2013

I didn’t make it. I woke up at 3am after the infusion had finished. Luckily Jesse had no reactions or coughing. Around 4am Jesse woke me up to help her get on the toilet. She was successful in going #1. We both climbed back into our beds and zonked until about 8am.

Jesse felt the urge to go #1 again. She was successful again. At 9:30am we began the last day of chemo for this round. 10:30am CST we started the last antibody. Since the doctors have decided to medicate her with Zantac (it’s an antihistamine for your GI track too) and if she coughed to power through, they increased her rate back to 10ml for 4 hours versus 5ml to 8hours.

I did a little experiment of my own. I did not let Jesse have any chocolate milk or ice cream last night or today. (It wasn’t hard… she is not interested in eating.) The last two days that she coughed I had allowed her to have milk and ice cream. I wonder if the antibody causes old allergies to resurface in a way. Jesse had a milk allergy as a baby.

Jesse did make it through the antibody with no coughing or other reactions. And by 3pm, we are done with Round 1 of the GD2NK.

The doctors came in to talk with me about the antibody. They also felt that Jesse needed to have an ultrasound of her leg. The swelling could be from a clot. Doing the ultrasound would allow them to rule that out as the cause of swelling and pain. And today she has seemed to be in more pain.

The discharge nurse returned. We completed the refresher on giving shots. She did give me a nice compliment about cloning me (ah if only she knew that might not be the best idea 😉 But I appreciate that she views me as capable.). I also talked with her about the concern of Jesse’s swollen leg and labia. She has made up an appointment to meet with rehab on getting Jesse a wheelchair.

I am fine with the wheelchair. I was getting really scared of taking her out of here without it or a wagon. She can barely walk right now.

During the antibody, Jesse felt the urge to pee again. While she was up, we changed her bed sheets. We washed her hair and gave her a sponge bath of sorts.

We planned to weigh her when she finished. But 90 minutes later, she was still trying to pee. When the ultrasound lady arrived, I was able to get Jesse to agree to get in the bed for the ultrasound as long as she could get back on the toilet when done.

Since the technician needed to press down on Jesse’s right leg to get a good picture, she caused her a lot of pain. Jesse cried and screamed, but amazingly never moved. We told her at the end she did a great job and that she was a big girl. Sobbing, Jesse told us: “I’m not a big girl. I was crying and screaming!”

Afterwards Jesse was back on the toilet trying again. In total she tried for 3.5 hours to pee today… and sadly no luck. The urge is there, but I am sure if the low hemoglobin plus medicine haven’t affected her bladder today. She has got Benedryl, Tylenol, Septra, Rocefrin, Advantix (sp? it’s like Benedryl), Ativan, Zantac, Morphine, Neuronton, Chemo, and Antibody. And I have probably forgotten something.

With the holiday, it took a little time for the ultrasound to be read. Luckily, Jesse has no clots. With the location of the tumor and the potential to be squeezing a blood vessel in her leg, Jesse is in danger of having a clot. And a clot is a big deal because it could travel to her lungs. I am praying that she does not get a clot at all. And I pray these drugs are slowing the tumor down. It would be awesome if it melted it.

Around 4pm CT, the nurse hung Jesse’s red blood transfusion. And right now she is snoring as she gets the blood. It’s either going to be straight Java blood or Oscar the Grouch has been donating again (thanks Oscar, but they need to figure out a way to filter out the grouchy cells). Her HGB (hemoglobin) was 7.4 today. On December 20, 2013 her ANC (neutrophils) was 12,900. Today it’s 3800.

Tomorrow Santa will stop by around 8 to 8:30am. The only medicine we have planned is the IL-2 shot and rotating nausea drugs. Jesse did eat 1/3 of a pancake.

I did check the mail this morning… then forgot this afternoon. I’d like to thank the students from Rebekah McClung’s class at New Kent School and Shaia, Sophie, and Cyrus. Jesse enjoyed looking at them. And y’all made some great cards with fantastic messages. 🙂

Wishing everyone a Merry Christmas Eve. May your holiday dreams and wishes come true.

Thank you everyone for the comments.  We have really appreciated the positive thoughts, prayers, cards, videos, and words of comfort.

Jesse awoke at 4am. She was running a slight fever, but she wasn’t drowsy. Since we were both awake, I went to grab a shower. Parents can’t use the bathroom in the kid’s rooms here. The reason is a really good one because of putting the kids at risk for germs. Parents have a separate room right next door with a bathroom and a couch to sleep on if you want.

My aunt commented that it would be nice if they had a shower in that space. It would be, but unfortunately some people can’t clean up after themselves. By this I mean they leave towels laying in the floor… wet towels grow bacteria. When your neutrophils (white blood cells that divide fast to fight infection) are wiped out by chemo… you have nothing to fight off bacteria or viruses or fungus. ( Which this reminds me of a question I want to ask the doctors about protecting Jesse from yeast infections). And to me that is probably why there are no showers in the parent area.

The one shower up here is down the hall with the laundry room. Every time I have gone in them, someone has left towels and wet wash clothes laying in the floor… even with a sign that says: “Please put your wet towels and wash clothes in dirty linen container.” The container isn’t hidden… it’s right next to the sign.

Last night I saw a girl walking around the floor barefoot. I wanted to ask her if she was concerned about what might have been spilled on that floor. But that’s not my business.

I also started a load of laundry. In the 15 minutes that I was gone, Jesse freaked out about when I was returning. I even told her I was going to grab a shower.

About 7:30 an optometrist nurse came in to dilate Jesse’s eyes. She wasn’t overly thrilled.

Around 8am, Jesse started coughing and crying that her throat itched. They gave her a drug like benedryl, but without the drowsiness. In 15 minutes she was better, and wanting to take a nap.

At 9am, the optometrist came to shine a light in Jesse’s eyes and check the backs. Thankful everything there was okay. He told me that the antibody may cause Jesse to have blurry vision up close. This could last 6 to 9 months after the antibody is complete. If so, then they will fit her for glasses. Blurry vision we can fix with glasses, I can handle that.

At 9:30 we began day 4 of chemo. Since they pre-medicate her, she asked for a donut, chocolate milk, and strawberries. She ate a few bites, then was full.

At 11am, the antibody was started. Since Jesse had trouble yesterday, they ran the antibody at 5ml for 8  hours instead of 10ml for 4 hours.  Jesse and I settled in to wait the 8 hours by watching movies on Disney.

The doctors stopped by to look at her. The resident is nice, but I wish she’d look me in the eye when she talks to me. I am not sure if I make her uncomfortable or she feels bad for us.

Jesse asked to use the bathroom saying she had to go #1. When we got her out of bed, we noticed the right bag had barely anything in it. Needless to say I felt very concerned. The doctor came in, saw the bag, and called the radiologist’s nurse.

The discharge nurse stopped by to refresh my memory on giving shots. At first I thought she was the radiology nurse. And I got her to re-tape the second loop in Jesse’s nephrostomy tubes.  At first she treated me as a first time parent or that she thought I was missing some marbles. On the marbles she is probably spot on. It is getting a little annoying that from some people I get this vibe I shouldn’t be left alone with my kid to do medical care. But I do understand that they have more than likely seen parents that shouldn’t be left alone to do medical care on their kids.

I explained to her what we had to do before. This changed her mind about me. Plus she witnessed Jesse having a mini-meltdown due to the morphine and getting stuck on whining. The line I sometimes use with the kids when they whine in a voice I can’t understand: “Sorry I don’t speak whine” or “Sorry I prefer to drink my whine.”

I will have to give Jesse IL-2 shots every other day and GM-CSF every day starting on Day 7 of this treatment cycle (we are on day 4 of the cycle). IL-2 is a drug that revs up the immune system. When Jesse had it during ch14.18 antibody, they infused it into her body at a rate of 5ml/ hour. This took a week, and we spent it in the hospital. Now they have a shot version. I am not sure Jesse will be excited about this, but I am glad we won’t have to deal with a big pole and IV line for a week.  The GM-CSF will help her increase her neutrophils.

She told me that her older patients found the LMX numbing cream to work better when they let it sit for an hour. She also said I could let the serum to sit out in the syringe for an hour to warm up as long as it was not in direct sunlight. I forgot to ask if I the shots had to be given at the same time every day. I think with GM-CSF before, we had to give them at the same time every day. But this protocol might be different.

As we were talking, Jesse began to cough. I asked her if her throat itched. She told me no. We called her nurse, who stopped the antibody to talk with the doctors.  The doctors decided to give her medicine (hydrooxydone… I think that is what I saw on the tag), let her stop coughing, and resume the antibody. After an hour Jesse was still coughing like she was trying to get something out of her throat. I kept asking her if her throat itched. She told me it tickled, but didn’t itch.

The doctors decided to see if she could not cough for 30 minutes. If she could, then we’d resume the antibody at 5ml. Then they came back and decided to stop the antibody for the day to give her body a break. Tomorrow she will have Zantac added to her premedications to help with the cough. I asked the nurse that since we had all the premedications on board could we change rates from 8 hours to 4 hours and try to get her through it faster. I am not trying to get out of the hospital earlier… it’s not like I am running home to spend time with Chris and Mike.

Then the radiology nurse stopped by. She was super excited that the discharge nurse had fixed Jesse’s right bag. The trouble was a kink in the line. And since then her bags have put out a great amount. I need to figure out a way to create a belt for her that would hold those bags next to her body securely and comfortably. Right now… that is not the case.

After she left, a research nurse stopped by. She gave me a yellow folder that I will need to bring to clinic every time. In it I will mark when I gave her the shot and who gave it.

As we finished talking, the doctors (3 of them) returned. They told me that Jesse’s oncologist is out of town, but they talked to another doctor who preformed another version of the protocol. This doctor said that a cough itself was not a sign of anaphylaxis and felt that we should finish the remaining 4 hours of antibody. They also feel that Jesse should be premedicated and given the antibody over 4 hours tomorrow.

Jesse fell asleep after the coughing fit, sleeping for 3 hours. The nurse took her temperature at 4. Around 5, I thought Jesse looked warm. I asked her to take Jesse’s temperature: 103.5F. At 4pm, she’d been normal. We gave her Tylenol and cultured her lines.

Right now we are waiting for pharmacy to remake the antibody. The rumor is Jesse will start infusing again at 8 or 9pm. And if she coughs to medicate her, keep listening to her to make sure she isn’t wheezing, and power through the antibody.

I will say with this one she has not bloated like the ch14.18.

I have to giggle at her (not in front of her. Lately she takes my thinking something is cute as equal to laughing at her). She wants to watch Scooby-Doo. We’ve watched all three episodes they have several times. Every time she screams at certain parts. We ask her if she wants us to change the channel, and it’s always no.

I talked with Mike earlier tonight. He told me that Chris asked when we would be able to come home. Mike explained to her that we might be here till June or August. He told me that she is having a really hard time with this new knowledge and the fact we won’t be there the rest of this year.

 

Around 1am, I heard Jesse call out “Mommy.” I answered with “Yes?” Her reply, “I wasn’t talking to you.” Then I heard her tell her sister let’s pretend. Not sure what they were pretending. Often they pretend that one of them is Mommy.

Jesse awoke around 4am wanting to use the bathroom. She was convinced she had to pee, but with the bags she has had the sensation twice before and no luck. She used my hands to pull herself from the bed. I got her to clasp her hands around my neck while I got her ready for the toilet. Then we got her on the portable with a pillow behind her back to make it a little more comfortable.

After an hour, Jesse was done. No luck on #1… but at least we did have #2. The antibody can lead to diarrhea so the days to come might be more.

She begged me to hold her hand and put a movie on the TV.  I finally figured out how to get the chair I could roll next to her bed to recline (yeah!).  I dosed in and out while she watched the Lorax and held my hand. She finally dosed off at sometime and slept until until around 9am. She still had delusional dreams. One time she started crying that Landan pushed her. I’m sure they were arguing about something in her head… and she probably deserved it. And that might explain when I told Landan to apologize, she kept saying he wouldn’t.

Mom came over to allow me to go to breakfast before the chemo started. I ran into the nurse practitioner in the back hallway. We talked about Jesse and the neuronton, if we were just prolonging her pain, and my feelings of guilt for even thinking that and how it sounded to myself like I was giving up on her. I want her to live. I want her to grow up with her sister, to fight with her, to do everything that she wants to do. I want to be able to get frustrated with her for the selective hearing.

Chemo began at 10. Then around 11, the antibody was started.  Before they gave her the antibody, the doctors increased her morphine base rate to .8ml. They also prescribed her ativan, benedryl, and tylenol. Then they gave her a .2ml bolus of morphine. Jesse felt the urge to go while this was happening. As she was sitting on the toilet, she went from talking to us to being very irritable. But she didn’t scream in pain.

At one point Jesse wanted to play rock, paper, scissors, shoe with me. I let her win the first time (she always stays on rock)… then I changed for the next time. She began crying that I won. To calm her, I let her win the next time… she started crying that I hadn’t won.

My mom went to the Ronald McDonald House to do the orientation for me. I appreciate how understanding the staff at Ronald McDonald was about me not coming. And I appreciate Mom going to the orientation for me.

With 90 minutes left on the antibody, Jesse started coughing violently. The nurse stopped the antibody. When she did, Jesse’s cough faded and stopped complaining of her throat itching. Since we stopped, the doctor on call was called to come look at her.

The nurse also brought up that she felt Jesse had way too much morphine because as we were talking to the doctor, Jesse fell fast asleep. The doctor agreed to reduce the basal rate to .7ml. She also wanted to run the remaining antibody at 1/2 the rate to see if Jesse’s throat itched.  We also talked about why they don’t start kids here with neuronton who are doing the antibody.  Our nurse mentioned that the first kid who did the study was given neuronton, but not other kids. The doctor commented on having someone in the hospital do a study on chasing the pain versus pre-treating for the pain.

Jesse finished out the remainder of the antibody snoring while sitting up, but she didn’t cough. Because we had to reduce the antibody rate she will do the remainder of the treatments at the 1/2 rate running over 8 hours versus the 4 hours. I’m fine with that. Not like we are rushing to get out of the hospital and home. I actually spoke to the doctors about how to manage her pain while she’s outpatient. They talked about discharging her with a pump. I am not honestly sure how I feel about this. She is very wobbly on the .5ml basal rate, which is where she would stay with an outpatient pump.

While she was sleeping my aunt and uncle arrived to spend the night and then take my mom back to their home tomorrow.

My family left around 4:30 to move some things to the Ronald McDonald House (RMH). While they were gone, Jesse woke up. She wanted to try #1 again. This time she was successful!

They returned at 6. My aunt, uncle, and  I went down to the cafeteria to get food for everyone. Jesse was only interested in eating ice cream.

After eating, Jesse complained of a headache, and fell asleep. We did use cold compress packs to help with her headache and put one on her leg. These are seeming to help and she dosed off. And the doctors have lowered her basal rate to .5ml of morphine. As the new shift began, her temperature began to increase again. Tonight it has reached 101.7. Earlier today it was 103.3. The doctors have ordered Rocefrin to just keep happening.

She slept hard until about 10pm tonight.When she awoke, the nurse checked her over to make sure that everything was okay. Jesse became increasingly grouchy with the nurse. I told her to stop being rude. She is still irritable from the morphine. Jesse began to cry that she was sorry. I know she doesn’t feel good, but she still needs to not be rude.

She calmed down, and asked what they have in the nutrition room. As I went out to look, she yelled after me that she loved me.  And she has asked me to scoot her close to the edge of the side of the bed where I am sleeping in the reclining chair. For the last few days she has felt so bad that she has not wanted to be touched.

I am a little concerned when she is discharged to the RMH. She’ll want to sleep with me, but I don’t want to take any chances of those bags getting ripped out on her sides. And I noticed tonight that several times she tried to sleep on her side.

Tonight she has eaten chicken noodle soup, chocolate ice cream, and asking for pretzels. Hope this all stays down (fingers crossed).

 

 

Today Jesse started the humanized antibody. She woke me up before 8am asking Landan, her 6 week younger buddy from home, if she could play with a toy horse.

At 9:30am, she began her chemo. This went quietly. She even ate breakfast while it was taking place. Not all of it, but at least a third of it.

Around 11am CT, they started her antibody. Within 5 minutes, Jesse was screaming that her legs hurt and then it was the back of her head. And I mean screaming bloody murder. She was yelling for me to save her. One time she yelled that she wanted to go to sleep forever. Our nurse called the doctor, and they decided to increase her morphine by a huge amount. I also got them to agree to give her neuronton, which I should have pushed for her to have yesterday to prevent that. Jesse was spoiled at CHKD because they started the neuronton before the antibody.

I did tear up from the fear for her and guilt at not really being able to save her from the pain like she really wants.  It makes you wonder what you are doing. I know this is about the best chance we have to save her life.  And if we can get the neuronton going ahead of the antibody, then maybe we can stop the pain.

The staff did tell me the first day would be hard because they chase the pain. I am going to push for that to change. Jesse is already suffering enough with her legs.

But since we were chasing the pain, we didn’t really catch it. Every 15 minutes I was hitting her button to get more. And with all the morphine in her… she was having dreams. In one dream, she was fighting Landan for a toy. In another dream, her dad and sister jumped a hole, and Jesse didn’t. In another, she fell out of a hot air balloon.

During her dream with Landan, I told him to give her back the toy, and that calmed her down.  She even talked about going outside to play with Emileigh, Landan, and Christine twice. It was a beautiful day back home and at least in her delusion, she got to enjoy it.

After 4 hours, the antibody and its pain were complete. But the morphine delusion isn’t. She has been waving her arms around randomly…  looking for grapes. Afterwards she jerks herself awake for a brief minute. Now she is asking for her boots.

We did get her up around 6pm because she said she had to go #1 and 2.  She pulls herself up using my hands and inches herself to the side of the bed. She hasn’t been able to do #2 since Sunday. We were able to walk her to the bathroom. It was a difficult trip because of the morphine. And in the bathroom she kept nodding off on the seat. I eventually talked her into using a portable toilet in the room because it had handles and a back where we can place a pillow. This allowed her to sit up on the toilet, lean back, and relax. She did look cute sitting there in our current situation. It’s not a situation that I would wish on anyone, but she did look cute.

It is a small victory for her to go twice today. She still has not peed since the tubes were placed. But the bags are getting equal, good return.

Around 8pm, her temperature increased to 102.3 F. The staff cultured her lines again. In 30 minutes it increased to 103 F. I do think it is going down now. The fever is either antibody or tumor related. Even with her temperature rising, Jesse still used please and thank you with the nurses. I am proud of her for remembering her manners at a time that I am sure she feels really bad.

Here’s to hoping that tomorrow will not be as painful or full of delusion. She is looking for a little horse toy from her toy box back home right now.

I am wiped from an emotional day… plus back home it’s 11:30pm EST.

The morphine pump through the night lessened her pain, but she was still having shooting pains in her right leg.

From Wikiepdia:

At 7:45am our nurse took us down to the Interventionist Radiology to place Jesse nephrostomy tubes. We really have no choice because the tumor is squeezing both ureters.

The anesthesiologist was very concerned about operating on her because she was running a fever of 102.3F. After talking with her oncologist, they decided to do it. But they did it with an tube down her throat.

After 9:30, the nurse called and said she was in recovery. I went to wait by the door while Mom made some calls about how she is going to get home. I have decided to keep my car here with me, since on Sunday they are making us move from the Grizzlies House to Ronald McDonald. I will have to go for orientation on Sunday morning… 45 minutes. It actually irks me a bit. Why do we have to do this right now when I have a sick child in the hospital?

But Mom will stay with her while I go deal with that.

At a little after 10, I heard her yell “Mom” through the door of the recovery room. After that we were allowed back in.

By 10:30am CT, we were back in our room and they gave her the 30 minutes of cyclophosromide and 30 minutes of topetecan.

While Mom was out of the room, Jesse looked at me and said she was hopeless. I have no idea where she got that from. I told her she wasn’t and to keep fighting we have camping to do this summer and especially in October.

Around lunch time a psychologist arrived to talk about Jesse. I have been concerned about her getting depressed and what would be the best way to help her. After talking with her, a nurse arrived to touch base about when Jesse was discharged.

Then our child life person found me. She allowed me to go upstairs and pick out items that equaled 10 stars for Jesse to receive from Santa. I was amazed at the choices… there are many generous people in the world.

This afternoon Jesse began to cough. Each cough lead to a scream because it hurt where the tubes have been placed. The doctors have upped her morphine to deal with the pain. And she asked her nurse to place pillows under her arms.

She did eat about 3/4 of a slice of pizza for lunch. Then for dinner she ate two bites of salad. She has drank more than she has eaten.

Also in the afternoon, she complained of the rash on her left belly itching. The nurses got some cream for it. We are thinking that this rash might be from the cloroprep. Then it was on her arm and shoulder on the left side. The nurse gave her Benedryl. It didn’t knock her out. In fact she just fell asleep. She has been fighting it for 30 minutes. And when she did go, she nodded her head 3 times. I couldn’t get her to explain why.

She also ran a fever this afternoon leading to the nurse culturing the caps again. Her culture from 2 days ago is coming back clean so far.

The morphine has also made her more itchy. She is having a hard time reaching her toes on her right foot, which seemed to itch more than other areas. I noticed that her leg at the thigh looks larger and her area looks larger on that right side. In fact she discovered that tonight.

She has not asked to go to the bathroom at all with these tubes. I am a little concerned about that. We did get her up to weigh her. With almost full bags she weighed 18.8. Took her off scale emptied them, and she weighed 19.3kg. This didn’t seem right to me at all, but the clinician weighing her didn’t seem interested in weighing her again. I did bring the concern up with the nurse. We were able to get her up again, and this time we didn’t let her hold onto the scale: 18.1kg. She was very shaky while having to stand up… and while waiting on the clinician to get someone to empty her bags, she had to stand for 5 minutes.

I had a really hard time trying to hold it together while they took her back for the nephrostomy surgery. And I am having a hard time with seeing how swollen her leg and groin are becoming. I really don’t want to lose her, but I don’t have the sense of calm and peace I had the first time we went through this. I am praying for a miracle.

Jesse did actually speak to Mike and Christine tonight. This is the first time in a week that she has talked to them. She has been refusing.

Mike did tell me about all the get well cards from her school: Norge Elementary. I am really grateful for those cards, and Jesse loved hearing them read to her over facetime. And thank you for the money to help cover Mike and Chris’ plane tickets. Thank you also to Mike’s coworkers for your kindness and assistance.

Later tonight we spoke briefly with her camping buddies. I am not sure if it helped or hurt. I know it hurt me to see my home and know that I was not right down the road to go back to it.

Man how I wish we were home… how I wish Jesse was as healthy as Chris and how I am thankful that Chris is healthy.

We received a call to come to clinic around 10am to sign the consent forms to be in the study. This means that by tonight Jesse will be inpatient at St. Jude’s. And that we’ll get the first dose of chemo on Friday morning. The doses will each be infused for 30 minutes each. On Saturday she will begin receiving humanized antibody. This will be infused over 4 hours.

The chemo will last 5 days. The humanized antibody for 4 days. Then we’ll be discharged for me to give her IL-2 in shot form every other day and GMSCF everyday until her immune system rebounds.

Then we had a meeting with the line nurse. Then we went to wait for her CT Scan. As we waited I worked on getting a hold of Mike to fax him the consent papers for him to be tested for his Natural Killer cells to see if they or mine are a good match for Jesse. At 1:30pm I took her temp: 103.1 F. We went back to clinic. They checked her for a virus by shoving a small tube up her nose. That didn’t go over well. They also gave her Tylenol.

We returned to Chili’s Care Center for the CT Scan. Afterwards we head back to meet with her oncologist here.

The news is not good. And I can’t tell you how devastated I am. I keep asking myself what did I do wrong. Where did I screw up? I know deep down it is a gene that went berserk. But it doesn’t stop the pain and guilt I feel.

The tumor has doubled in size. It is in her bone marrow. Even the original mass is now larger. I asked him if the old tumor had woke up. He responded that it would take days of tests to know that. I had sent Jesse out with mom to the waiting room.

I did notice today that her area was more swollen on the right side. He told me that her kidneys renal function is still good, but the tumor is now squeezing both tubes to the bladder. And unless we surgically put tubes from the kidneys to the bags on the outside of her body, her kidneys will get worse. So tomorrow afternoon we will go have that put in place.

In the mean time, we have having a blood infusion tonight. Her blood hemoglobin was 7.7, and they want that higher for surgery. And they have her on a morphine pump.

Tomorrow morning early she should get the first dose of chemo. If it works to shrink the tumor by 50% or more, he is talking about having surgery to remove what they can at some point down the road.

If you want to send Jesse a card to cheer her up,

Jesse Hall Patient
St Jude Children’s Research Hospital
262 Danny Thomas Place
Memphis TN 38105

Please no plush toys. If you are inclined to send toys and books, they must be new. The reason for this and the no plush toys is germs and her becoming neutropenic again. If there are germs on them, she will have nothing to fight back with.

If you want to just send cards, that would be awesome. As of now those are easier for me to transport back and forth, and I will have no vehicle to carry extras from the hospital. Not trying to sound ungrateful, just thinking of the logistics of getting Jesse and everything out of the hospital on Wednesday or Thursday… and back to the Grizzlies house or to the Ronald McDonald House or Target House, where ever they send us. And then keeping them safe when we return to the hospital in 3 weeks to start the next round. ( I am trying to be optimistic… it is hard because of how scary this is… and how badly I want to keep her.)

I do feel guilty for getting frustrated with her the last few months… for being mad at her for fighting with her sister… for not listening to me. Last night she was very worried Santa won’t come to see her. I asked her why. She told me that she’d been bad.

Tonight, she told the nurse that she looked better with her glasses on. Luckily the nurses here are as awesome as the ones on 8B at CHKD. I am going to have to teach her how to bite her tongue on occasion.

Tomorrow morning we have the surgery to help her kidneys and get her blood pressure out of the 120s over 90s.

Around 10pm CT, I took Jesse’s temperature. It was 101.1 F. Here a fever is 100.9 or 100.4 for an hour.

I called their Medicine Room, which is the equivalent of an Emergency Room.

I figured they would remove the caps, take blood samples to make sure she had no infection, and maybe admit her. I didn’t tell her that though, because she was worrying about coming back to the Grizzlies House.

When we arrived I asked them to wear masks because I thought the caps were coming off the CVL. I was wrong. Here they take the blood samples and leave the caps.

They gave Jesse a dose of Rocefrin through the IV, and sent us back to the Grizzlies House.

December 19, 2013

I have been trying to give Jesse morphine every 4 hours to keep her pain regulated. I had been trying every 5 hours… probably not the best plan.

At 2:19AM CT I gave her 2ml (4mg). By 5:30AM CT she was awake and crying from the pain. I gave her another 2mls and took her temperature: 102.3 F.

I called the Medicine Room, and the doctor okayed her having Tylenol since we’d take cultures.

Jesse woke on her own at 8AM CT. She actually wanted to get out of the bed and walk into the other room of our suite to look for Grandma. This last week she has not wanted to walk anywhere.

Today we head over at 12:20PM CT for our first appointment. She has to remain NPO until after 2PM so she can prove to them she can do a CT Scan without sedation.