Chris and I tried sleeping on the couch while Mike took the chair. Let’s just say that the buyer of that furniture better not run into me because they will be spending a night on both to get a clue. Around 4am, I gave up the fight opting to sleep on the floor, which was way more comfortable. Sad.

At 8am, Jesse woke up, which woke us all up. No biggie because the nurses were starting to come in.

First the clinician came in. While Mike took Christine to grab breakfast, she returned to change the bed. Jesse hates the hospital bed, and when she is awake she’d much rather be out of it.

Around 9:30, a volunteer stopped by to offer the girls crafts. She spent some time painting and crafting with them. The girls loved this and the attention. Christine talked and talked ant talked and talked. Don’t worry Jesse talked over her.

The teacher came by at 11:30 for a half hour. She laughed at how much both girls talked while they are together. I told her there are times I feel like I can’t catch my mind because they never stop talking. It is a good thing that both feel great enough to be talking so much.

As the teacher left, I was worrying about Jesse’s platelets. She was due to get them because her count was 11. They had pre-meded her at 11, but no sign of the platelets. Luckily Jesse has not run a fever since the temperatures taken right at the time she got blood yesterday. But with her ANC being 0 still, we aren’t moving.

The platelets were finally hung around 12:30pm. The nurse tried to flush the white line… nothing. Nothing going in, nothing coming out. This meant that Jesse would need TPA in the line to help break up clots. I am not surprised by this because I have been having trouble with the line for the last few days.

The nurse practitioner stopped by. Mike and I both voiced our concerns over the meeting we were supposed to have with the main oncologist today. This meeting is very important to us. We need to know what he is thinking. Yes I like to plan ahead. I want to know when Jesse and I will be home. She felt that it would be after 1pm before the oncologist could come see us.

Jesse was scheduled for an ultrasound of her kidneys and bladder today. But they added an ultrasound of her groin due to the swelling. Mike and I have noticed that since starting the meropenem the swelling has subsided. This really makes me feel like something is going on that we are just slapping a band-aid on.

And slapping the band-aid on is not good. This means that if we return home to recover from round 6, it is more than guaranteed we will end up in the hospital because of fever. Thus negating the reason for getting home.

As we left for the ultrasound, the social worker arrived. I hate that. I hate how people arrive at the worst possible times. I also hate not having a schedule while we are inpatient. Why can’t I know when to expect people while we are inpatient?

Around 2pm, I asked if anything had come back on the blood cultures and urine. The nurse said no, but in her experience if the analysis came back good, then it was a good sign of nothing coming back on either. We’ll see.

About 2:30pm, the line nurse came with the TPA. Fortunately she was able to get it into Jesse’s line. The TPA works to break up clots and often needs about an hour to sit in the line. Then the nurse draws it out instead of flushing it through like heprin. (So kind of like ethanol, it sits in the line breaking up clots. Ethanol works to prevent biofilm and therefore places for bacteria to hide).

About 3pm, the attending doctor, fellow, and medical student made the mistake of wandering into our room. I say that because they more than like left the room, and all said “Eee they are not happy.” The attending was very nice. I really like the guy. And he knows our home oncologist well. Even lit up when we mentioned his name.

The fellow was very nice, but she wanted to explain to us that they only deal with the acute. Honey, I get that. I know you only deal with the acute. I am using you as the vehicle to get to the guy who dealing with the long term, which is basically what I told them. And I think the way she was talking to Mike was making him really mad. He hears me voice my frustration of being treated all the time here like I just got off the boat, and he definitely got a taste of that with her.

I think the poor medical student didn’t know what to think. The attending acted like he has seen this before. The fellow told us we probably wouldn’t see our main oncologist today. The attending told me on the side that we would see him today. And I really feel like he made that happen. Plus when Jesse found out he was was buddies with our home oncologist, she was way more receptive to letting him examine her.

At 3:40pm, our main oncologist came through the door. Turns out, he ran into our home oncologist, who was his fellow 10 years ago. Not sure if our home oncologist warned him of my need to plan, but the oncologist here said, “I know you want to plan, but we just can’t right now.” I am strongly thinking he did… Wonder if they had a laugh about my Sherpa backpack. (I weighed it here… surprisingly only 30 lbs… and yes I was actually disappointed).

He told us that we can’t really determine what we are going to do until after Round 6. But the more we talked, I am not sure at this point we are going to get to round 6. He talked about her kidneys. Ifosphomide is hard on the kidneys, and in Jesse’s case, it has caused her kidneys to leak electrolytes. Hence her having to take sodium bicarbonate and potassium.

He told us that he had talked with the radiologist here. Radiology is a possibility because it has been awhile since she had radiation. And he asked her home oncologist to send him Jesse’s scans and radiation information from home.

He talked about needing to have her see the urologist here before starting round 6. From the way he sounded, if we do start Round 6 there is a good chance that Jesse will have stents put back in her ureters.

Mike and I asked him about the swelling and decrease in swelling in her groin since having meropenem. He feels that Jesse has an underlying infection which has not fully healed. Every time we knock her ANC to zero, it has room to grow. This infection might take months or years to fully heal. This for me raises the question of is it really safe to come home if Jesse does do round 6 of treatment because we’ll end up in the hospital there.

Mike asked about us coming home. The doctor said that he has never seen a kid get through ICE chemo without fevers. We could rush home, but we will more than likely end up in the hospital there with a fever till Jesse’s counts come up.

He was extremely surprised at how good Jesse looked. I guess he thought she’d be in the bed asleep. Instead Jesse was sitting on the couch between Mike and I. She did get into a fight with Chris while we were talking with the doctor, but a snap of my fingers put an end to that.

I also told the doctor that I am tired of the people not scheduling times when we are inpatient, and then all showing up at the same time. He mentioned a mental break. I am not sure I want to take that. Yes we might need it, but I need to get this done so Jesse and I can get home more permanently. I hate it here. So does Jesse. I feel like a mental break prolongs the pain of being in Memphis.

So basically the plan right now is:

1. see if this is an infection in her urine or blood
2. see the urologist
3. talk with infectious disease doctors
4. determine if her kidneys will let us do round 6
5. if we do round 6, wait to see what scans tell us before we more onto the next phase
6. If we do round 6, determine then if we put the stents back in
7. After round 6 determine if we let her recover before radiation

Basically we are still in a holding pattern. If he would just communicate with us this stuff, we would not have to squeak so much to get a response. (Mr Daily’s, my senior government teacher, saying “The squeaky wheel gets the grease” always pops in my head.) But we do have a potential plan. This does mean we will be potentially delaying the start of round 6 due to scans. We will have to wait to see if they actually do scans. And then from there, what they will/ can do.

Mike and I are as happy as we can be with what we have been told. The doctor is pleased with how Jesse is recovering. And I guess this is the best we can ask for at this time. I am hoping that he understands I don’t fully expect the tumor to disappear. I just want to get it under control, and prevent her having to do this again as much as possible. He did make the comment to not worry about what I can’t control. Yeah… good luck with that.

Mike ran over to Grizzly for a shower. Then Chris and I have come over for a shower and to do laundry because Chris has no more pants. Trying to explain to her that she had to wear pjs till laundry is done is “fun.” I am going to buy a cattle prod for her as a hearing aid. Sheesh.

Day 109

Last night there was a very impressive storm here. I heard it over the fan that constantly runs in the room. The fan constantly runs to drown out the sound of I-40.

I finally zonked around 3am.

The only thing that Jesse had to do at St Jude was school. We did that and headed back to our room. There I changed Jesse’s tape and claves, then we waited for time to get Mike and Chris.

Thank you Pat and Dallas for the rabbit, candy, and other goodies. Thank you Mom for the coloring book.

Day 110

Saturday, we ran to Target and Kroger. Jesse enjoyed playing with her sister. I got in a run around here. I am getting out of running practice 🙁

Day 111

This morning, Jesse looked pale to me. She also complained of being tired. Against her wishes, I called the medicine room to see if they would do a blood count for her.

We arrived at the Medicine Room at 9am. Jesse’s temperature was 98.8. The nurse took her labs, then witnessed me giving Jesse her huge potassium pill. Turns out there is a better way to give pills. You can get capsules from the pharmacy, cut the tablets, and jam the pill in the capsule for swallowing. Why do I get to find these things out late in the game?

Mike ran back to the room to grab his phone. As Mike was returning the nurse came to take Jesse’s temperature for blood… 100.5. She opted to wait for awhile and try again. Chris and I ran back to the room to grab some snacks Jesse might eat. While we were gone, the nurse took Jesse’s temperature again: 100.9.

As we were returning, the doctor was coming to examine Jesse. She will get meropenem again. I don’t know how long. And that was basically all he said. He did tell us her platelets were 28, ANC was 0, and red blood was 7.2.

The blood transfusion took 2 hours to complete, and by 3pm we were headed upstairs to a room. And actually a room right now with good internet connection and one wall made of windows. Why can’t all the rooms have these windows? Light, wonderful natural light.

The nurse came in evaluate Jesse. Turns out they are stopping the potassium and nitrofurnation. The potassium can be given through the IV pump. Since we are doing meropenem, there is no reason to continue with nitrofurnation.

Right now we do not know if this fever was the cause of a UTI or something else. It will take 48 hours to know that. All we know is that because her ANC is 0 we are trapped back in prison. Yes this place is the equivalent to me. Jesse’s medical record number is the equivalent of a prison record number. There has to be a better way to treat cancer that would allow a child to stay home more often.

The nurse in the Medicine Room telling me about the capsules apologized for adding the capsules to our plate of things to have to do. Mike and I both said at the same time, “All of this is a pain in the butt.” It’s hard to be happy or feel like yourself (even your old self) when you constantly have to worry about the next step and feel like the treatment is not working. Plus we aren’t home. Jesse is a homebody. Heck I would rather be at home too. At home she has her friends, her sister, her life. Here its constant strangers in and out that you have to be nice to when you really would rather be left alone.

Chris and I ran back over to the room to grab some clothes, toothbrushes, and snacks (plus showers) for the night. When we returned the security guard made us sign in. More like feeling you are visiting prisoners. I am surprised she didn’t search my bag for contraband…

I asked when this procedures started (because between the three of us, we’d been in and out of this building 4 times today without being questioned.). Turns out some guy got in the building last week, onto the second floor of the hospital, and started a ruckus of he wasn’t leaving. The police had to remove him in handcuffs and leg chains.

The security team rolled the video back. The guy who was on the desk when the trouble maker got in no longer has a job. And parents have been telling the security team homeless people are jumping the fence somewhere on the property asking for smokes. I noticed on my run yesterday that a construction gate was wide open with no security person at that gate. Some concern…

I gave Jesse her shot when we returned. Then the doctor came in to see Jesse. Nice guy. While he didn’t touch Jesse, he didn’t gown up. Not his fault entirely because there is no sign on the door that Jesse is in isolation. We talked about her ultrasound I was told would take place tomorrow. He left to see if that was still on the books. I also talked with about if this is a UTI, I feel like we aren’t fixing the trouble. I am tired of the band-aid approach. I hope I am wrong. I hope this fever is because of the il-2, which we might never have caught had Jesse not needed blood.

Since getting the blood, Jesse had not run a fever. She has has complained about her stomach hurting.

I am concerned how this is going to affect our meeting with her main oncologist. Will he make the effort to come upstairs tomorrow? Or are we going to have to chase him down? We need to figure out what is really going on in her right labia and groin. This swelling is a concern, and just blaming blood flow isn’t going to cut it. We need to figure out something to stop the swelling. And if there is an infection pocket there, we need to do something.

The last few days I have noticed that Jesse is swelling again in her right hip/ groin area. I don’t know what these means exactly, but I worry that it’s not good.

Mike and I also have had several discussions of being really tired of the lack of communication we are receiving from the doctor and nurse practitioner. Mike told me that he planned to talk with social work when he came to get this sorted out. I know that he is trying to help me because I have a lot on my plate taking care of Jesse. But without intentionally meaning to, it made me feel like I am failing Jesse.

And this morning when I saw a face that I trust and haven’t seen in awhile, I told her that I was tired of not getting answers, the swelling, the feeling that we needed a back up plan, our tiredness of not being home, and how we feel like the biggest inconvenience being in isolation. All of this was said in ear shot of the clinician.

I don’t know what she said to our clinic nurse, but her attitude towards us was very different (in a positive way). She told me that our main oncologist has a one track mind on top of a stomach you can set your watch by. And when he is thinking about a new patient, we are just a blip on the radar. This is frustrating to me.

If we had not received the level of care and attention we did at CHKD, I would not know what I thankfully do know. And here if I didn’t know it, we really would be swept under the rug.

She also told me that he was not here today, but would be back tomorrow. So much for having him look at the swelling today.

After an hour and half, the labs came back. Jesse’s platelets were at 28, ANC at 0, and red blood at 8.8. The nurse practitioner decided to order Jesse some platelets for the weekend after she finished talking in baby talk to us. Literally she came in and asked me if Jesse went “Peesie-Weesie” and “Poppies-Whoops” yesterday and the day before. Luckily I guess the look I gave her put a stop to the baby talk real quick. Really who talks to people like that?

Once I got her to talk to me like an adult, we discussed letting Jesse do the recovery of Round 6 at home. The nurse practitioner sounded like this might be a real possibility. We would have 4 days to get Jesse home before her ANC would tank. And then we’d have to be really careful to keep her from getting an infection. But I think she’d recover better at home.

When I talked with Mike, he mentioned Jesse and I flying home and him driving. No way. I don’t want her on a plane. Google maps says that it’s 12 hours from here to home. It might take us 16 hours, but we’d be home.

From the way she talked, Jesse would get tanked up for the weekend. And she agreed when I asked if Jesse was getting some red blood too. At 12, I walked out to take Jesse to the bathroom. The clinician told me they were still waiting on the Medicine Room to be ready.

At 1pm, I walked out to take Jesse to the bathroom again. The clinician said they were still waiting. At 2pm, the door flung open. The clinician said, “I thought you guys were gone! I went to get something to eat, and they are ready for you at the Medicine Room.” Sigh.

In the Medicine Room, the nurse had a nursing student with her. So she was busy explaining everything to her. When she mentioned Jesse was getting platelets and not red blood, I looked at her quizzically. The nurse told me she would call the nurse practitioner and double check. Turns out that with her red blood being at 8.8, they aren’t going to give her red blood. The platelets started at 2:30pm. Finally by 4pm, we walked out the door.

Tonight they are having prom for the high schoolers. Jesse and I went over to watch the limo arrive, but Jesse couldn’t make it to wait. At least we got her some vitamin D.

Back at the room, I gave her the two shots she needs. She did eat a banana for dinner. Getting her to eat is getting difficult. She has 3 loose teeth combined with not liking the food here isn’t making it easy. Plus the antibiotic is making her have to go to the bathroom more, and she wants to control it. This is leading to some pain because she goes and forces herself to stop.

I am getting really frustrated with her lack of not eating and trying to hard to control her bowel movements.

Yesterday Jesse and I didn’t really do anything. I tried to work, while she was bored and expecting me to entertain her. Not my strong suit when I am trying to work.

Today she had school. We are just praying the fevers stay away so she doesn’t end up back in the hospital.

Thank you Mt Pleasant Baptist Church Tuesday Morning Bible Study and Uncle and Aunt Carolyn for the cards. Thank you Meme and Papa and Greg and Beverly for the cards and gifts.

Thank you Abby for the stuffed rabbit. Jesse loves it. Thank you Elaine for the crafts and bookmarks.

Sorry everyone I really don’t feel like doing a post tonight.

Day 103

On Saturday, I got my car back. Jesse and I ventured out to Target to grab some snacks. The rest of the day was low key.

Day 104

On Sunday, Jesse and I rode out to Germantown just to get out of the “cave.” When we returned, she did some school work and read a book.

I downloaded the Disney Junior Appisode App for her. She has loved playing with it. Later we talked to everyone at home. There are times while we are here that I feel Jesse and I are living on the fringe of our lives back home.

Day 105

This morning Jesse complained of being tired. I figured her red blood had dropped. Her counts were halving between Thursday and Friday… I figure by Saturday she was 0 on the ANC.

At 10:15, we headed over to clinic. Jesse and I walked through the double doors of the isolation entrance after a couple with a baby. Cute little girl with a tracheotomy, who stared at Jesse’s glasses and face mask intently.

I called Jesse’s clinic. The phone rang and rang and rang and rang… and well you get the idea. As I was about to give up, a clinician for the little girl arrived. She allowed Jesse and I to walk through the double doors of the holding area into the hospital. She asked if we had called. I told her that we had, but no one answered. I am really starting to wonder where that number on the wall for me to call clinic goes. Is it a separate phone that people can choose to ignore?

The clinician called our clinic. She must have know the right number to call for a response. She left to take the other family where they needed to go (B clinic, which is now on the 4th floor of the hospital). I dressed Jesse in the yellow gown, put gloves on her hands, and contemplated putting on a white gown. Heck we’ve been in isolation so long that they should just tell me the code to go in the back door of clinic. Then I can walk us over to where we need to be.

Our clinic clinician walked through the door 2 seconds before the other clinician returned from her run to B clinic. I know it’s a major inconvenience having to deal with isolation patients, but I am getting tired of feeling like Jesse is a hassle.

At clinic, the clinician took Jesse’s blood pressure and temperature. Jesse asked her to take mine. As she finished with me, the clinic nurse arrived to get Jesse’s blood for labs. Then the teacher appeared. Jesse was very excited to see her.

As Jesse was in school, her main oncologist popped his head in the door. I told Mike last night that he would stick his head in the door, say something and leave, because a) he didn’t want to have to put on the gown and b) you can set your watch by his stomach.

His comment was that her ANC is zero and be ready for a fever. I am praying this time we are not going to have to be inpatient with a fever. Please God let us stay out of extra hospital stays this round and next.

The nurse practitioner came in next. She said that Jesse would be getting red blood today because she is at 8.4 and obviously trending down. She then debated with herself about ordering platelets, but finally decided to wait till that number came back.

She asked if Jesse had been taking the sodium bicarbonate. I told her yes since Thursday morning. Then she asked if she’d been taking the nitrofurnation. Yes since Friday. She decided to wait till all the chemistry information returned before stopping or continuing the sodium bicarbonate.

She left, and the teacher finished up her lesson with Jesse.

Around 12:30pm, the nurse practitioner returned to let us know Jesse’s platelets are at 14, and she’d be getting a transfusion of platelets with the blood. The sodium bicarbonate will continue. And she needs to eat bananas and citrus because her potassium is low again. I left to find Jesse a banana. In the cafeteria, all the bananas had black spots on them. Due to not having any ANC, I didn’t want to chance her eating a banana with black spots. I returned to the room to figure out how to get a banana for Jesse.

I called room service. The woman told me I can ask the cafeteria if they have any unblemished bananas in the back. I went back to the cafeteria, asked a chef, and she was more than happy to oblige. I was concerned that the chef would be annoyed because I wouldn’t (couldn’t) take one of the bananas on the shelf.

At 2:15, the clinician came in. She asked if we were ready to go to the Medicine Room for Jesse’s transfusion. She even made the comment she’d have been there sooner, but she was busy talking. If she was talking to a family in treatment, I have no issue with that. But if she was talking to her buddies, that one will bother me. Jesse and I would love to get out of here. The sun is out today… it’s in the 70s… it’s freezing in these rooms.

As she was handing us a gown for Jesse, someone hollered her name. She disappeared to see what was going on. Jesse and I stood waiting in the hall for her to finish what she was doing to take us to the Medicine Room. I could hear her on the phone. Then I could hear her pager go off. Then I saw the receptionist looking for her. The clinician saw the receptionist too. She commented that she had to go, then to the receptionist she said to tell the clinic nurse she was taking us to the Medicine Room.

I wish they would just let me walk Jesse over. It’s obviously the biggest inconvenience for everyone that Jesse is in isolation.

In the Medicine Room, the nurse was really quick getting Jesse’s Benedryl hooked up. The Tylenol was already waiting on the table. This and the countless people checking to see if we’d gone makes me wonder how long ago they were ready for us.

At 2:30pm, the platelets were hung to transfuse. By 4pm, Jesse’s red blood transfusion was ready. Since she received a half bag, we only had to be in the Medicine Room for 2 additional hours. Jesse was beyond excited to get out of that cave. I keep thinking there has to be a better way. Why are the kids locked in these buildings away from being able to see outside?

By 6:30, I had given Jesse her shot and started the ethanol dwell in her lines. The white line is starting to be difficult to flush. She seems to have perked up a bit from the blood transfusion. But she has not be interested in eating today. I am trying to talk her eating something because she weighs 14.8kg (32.56lbs).

Today Jesse and I met the line nurse at 9am. This is the only thing for today that has gone smoothly.

She cut the sutures from around Jesse’s line, which looked to be holding a lot of junk. Jesse whined through the entire procedure because of some notion she had in her head it would hurt, even though we told her it would not. At the end, Jesse even said, “Wow that didn’t hurt.” I really enjoy not being believed.

Then she whined through finishing the tape change. She complained about the betadine hurting. Luckily afterwards, she stopped complaining. I left Jesse to go get her sodium bicarbonate and il-2 shots. The only thing ready was the sodium bicarbonate. Turns out someone on the floor decided to discontinue the il-2 shots after the first one on Wednesday. She needs 6 shots total over 12 days. The girl at the counter felt awful, but it’s not her fault. She is caught in the middle of people not paying attention, who really need to be paying attention.

The pharmacy called clinic to see if Jesse was supposed to still get the shots. They can’t just take my word. It would take about 45 minutes for the prescription be filled. I returned to Jesse to wait. There was no point in leaving clinic, then dragging her back over to go through the isolation procedures again. At 10:30am, they called that the shot was ready.

When I arrived at the window, the girl gave me 1 shot. I looked at her puzzled because Jesse should have had 3 shots in the bag (or at least that is how they have done it before). I asked her about this, and she went to ask the person who filled it. Turns out they read the script wrong. After 15 minutes of waiting, the other 2 shots were ready. Jesse and I headed out the door thinking that we were free of St Jude’s for the rest of the day.

I started laundry and ordered us some lunch about 11:45. At 12, my phone rang. It was the nurse practitioner saying that Jesse’s urine culture came back positive. She had written an order for her to get nitrofurnation for 14 days/ 4 times a day. Then she asked if we’d left already. We had. It would be so nice for them to work out a system to send medicines over to kids in isolation.

I waited till after we ate our lunch to carry Jesse back to get the medicine. The nurse in isolation was extremely kind in letting Jesse sit with her while I grabbed the medicine. As we were walking over Jesse sneezed because of the sun. I didn’t think anything of it, and since we didn’t take her mask off while over there, I didn’t see the blood till we returned to the Grizzlies House.

At the pharmacy window, they had just received the order. Craziness because the nurse practitioner told me she was hitting send at 12 when we got off the phone. I guess the bright side is at least they did get it.

With Jesse’s platelets being 31 yesterday, I had a really strong feeling they had tanked further. Mind you it was not a great deal of blood and looked to have stopped on it’s own. I grabbed the laundry from the dryer. Then called the Medicine Room as I was told to do, who transferred me to D clinic, who said come on over.

Jesse did not want to go back. I didn’t either for that matter. We entered the isolation door, suited up, and were lead to clinic. In clinic, they took two vials of blood. And then sat waiting for 2.5 hours. Finally at 4:30, the clinic nurse came with the counts and to take us to the Medicine Room. I really think that being 4:30 on a Friday afternoon, they needed to get rid of us so they could leave for the day. When 5pm hits around this joint… if they don’t have to stay late, they won’t.

About 5pm, a nurse finally came to the door to ask what Jesse needed to drink with her Tylenol. When she saw that Jesse had a drink, she asked about a warm blanket. She returned a few minutes later with Jesse’s pre-medications and the warm blanket. Before I would let Jesse have the blanket, I asked the nurse to take Jesse’s temperature. I didn’t want the warm blanket to cause a false reading.

After taking her vitals, the nurse gave Jesse her Tylenol and then started infusing the Benedryl. Jesse zonked in 15 minutes. At 5:30pm, the platelets were finally hung. Jesse’s platelets were at 17 this time, but for some reason they only gave her a 1/2 bag. I have a strong suspicion we’ll be sitting in the medicine room tomorrow waiting for platelets.

By 6pm, the platelets were complete. A different nurse walked us out. My first impression of this woman was not great. But as she finished Jesse’s platelets and walked us out, I got the very strong suspicion that of the many people we have met here, she is one of the ones that truly, truly gets it. She looked so guilty that we overheard a co-worker of hers talking about her trip to the Bahamas next week. I guess she could sense that I have reached the point of totally hating this place. I wasn’t nasty to anyone. I just wasn’t overly friendly.

I ran Jesse and I through the rain back to Grizzlies. We were 30 minutes late on her shot. I gave that to her as soon as I could. Plus gave her the il-2 shot. Now the ethanol dwell is waiting for it’s 2 hour mark in her lines. Jesse is watching Frozen again… giving me the play by play.

I have a feeling tomorrow we’ll be back in the Medicine Room. Jesse sneezed tonight and there was no blood. But her ANC dropped from 3800 yesterday to 1600 today. Either Saturday or Sunday, she’ll need more red blood cells. And by Monday, she will more than likely need blood if her counts continue to fall. Now we need her ANC to start climbing. She needs to get out of here, and so do I. I hate the lack of windows to see outside. I hate living in a cave. I hate the hospital doesn’t have windows in all the rooms.

Thank you Aunt Carolyn and Uncle Jerry for the activity book. Thank you Laura, Glen, Anthony, and Alison for the book (Jesse has really enjoyed reading it), card, J, and stickers. Thank you Ruth for the card. Thank you Valerie for the hats. Jesse loves her ladybug one. Thank you Mom for the card and stickers.

Sitting here either listening to thunder or a chair scrape the floor above us. According to the Weather Channel (shock shock, they are actually covering the weather!!), a thunderstorm is headed this way. Jesse was worried about it earlier, but I reminded her that we are hiding in a cave right now. We did have one heck of a crack of thunder.

This morning we had to be at clinic for labs at 8:30am. Jesse was not interested in getting up at all. She had flopped like a fish out of water in the bed till 11pm last night. I did wake her at 6am to use the bathroom, then again at 8am to use the bathroom. At 8am, she was screaming at me that she didn’t need to go and she was tired.

We walked in through the isolation doors hoping that maybe, just maybe we’d be released from that today. Nothing against the nurse in isolation, but it would be nice to have a little more freedom. The nurse walked us to D Clinic.

I ran out to get Jesse a drink while she started watching Frozen again. When I returned, the clinic nurse had taken her blood for labs. The clinician was coming in for her temperature, blood pressure, and weight. After eating 3 pieces of pizza last night without any peractin, Jesse’s weight was 14.7kg (32.34 pounds). What the hey?! Someone’s scale has to be off.

We returned to the room to wait for her labs to be finished. Around 10am, the numbers had returned. ANC was 3800, platelets at 31, and red blood at 11.3. I also found out that Jesse’s line appointment we had scheduled for 11 on Friday was put in for 9am. So glad that line nurse listens to people (total sarcasm). But at least after 9, we might be done at St Jude for the Friday. Not like we will go far. With Jesse’s ANC set to drop at anytime, I don’t want to take any chances.

The fellow for infectious disease dropped in next. I am not sure what it is about this fellow. We have only seen her one time and that was in December when they were trying to determine if Jesse had an infection. She is nice, but there is something about her that makes me uncomfortable.

Jesse’s urine culture from March 24 has grown 2 strains of bacteria. One is a gram negative that they have not typed yet. Yesterday this is the one I was told grew 20,000 colonies. The other is a Streptococcus (I can’t remember what group). She told me until Jesse had a clear urine test we would be in isolation. She looked Jesse over. I asked her if our being in isolation would impede our chances of getting home. She told me no. Then she talked about catheterizing Jesse. Thank God Jesse had on her earphones and couldn’t hear that. I told her no that was out of the question. We’ll take our chances of not having the perfect urine sample in exchange for Jesse not being in pain. Plus shoving that up in her when her platelets are low and ANC is dropping didn’t seem like the best idea to me.

After she left, Jesse needed to use the bathroom. She was not happy about having to give a sterile urine sample. Once we got that over, the infectious disease doctor came in. He told me that the strep is what they normally see in urine cultures, and therefore he is not concerned. The gram negative one does concern him. He talked about putting her on two weeks of an antibiotic that collects in the urine and will sterilize it. From what they have seen, once kids take this they have a 3 to 5% chance of having a UTI again.

Today’s urine collection counts as collection 1. If this comes back negative on Saturday, Jesse will not get the antibiotic. Then Jesse has to have another clean urine sample to get out of isolation. At least in being in isolation we aren’t having to be out in the general germy population of this place.

Once the infectious disease doctors left, the nurse practitioner came in. The main oncologist stayed at the door because he either didn’t want to have to put on a suit or it was too close to his lunch time. He did say that if Jesse ran a fever we’d use meropenem instead of the antibiotic the infectious disease doctors recommended. And he wasn’t going to worry about it till Monday. I asked him about her low platelet count. He commented that he wasn’t going to worry about that either till Monday. If Jesse has a nose bleed or significant bruising, then we can go to the Medicine room for lab over the weekend.

Once we finished with them, Jesse and I headed back to the Grizzlies. She ate 2 pieces of pizza, but 2 hours later she was complaining that her stomach hurt. I gave her a Benedryl, and she slept until 5pm.

While she slept the psychologist called to check on Jesse. Because of complications in her pregnancy, she is having to transfer patients to other people. I opted to go with a call them as needed.

Then her nurse practitioner called. Jesse’s CO2 level is still too low at 16 (normal range is 20 -31). They feel that her kidneys are leaching electrolytes because of the ifosphomide chemo. To help her, they have prescribed a sodium bicarbonate tablet. And they are setting up an appointment with nephrology here to see if there is anything we can do to strengthen Jesse’s kidneys before starting the next course of chemo.

At 6pm, I gave Jesse her GM-CSF shot. She only complained of pain after the shot was done. Now she is watching Frozen again.

Oh yes, as for my car. Turns out the DVD player in the car was wired hot, meaning it was constantly draining the battery. We never noticed before because we drove it almost everyday. The fix right now is have the fuse removed. We’ll deal with that when Jesse and I get home.

Day 97

Yesterday, Jesse received an albutriol treatment before starting the etopophos. For awhile afterwards she seemed to feel pretty good. Then the ifosphomide started, and it was downhill. But other than throwing up, we didn’t have extra issues.

Day 98

Today she feels like crap. And crap isn’t even a strong enough word for how she feels. Her red blood was at 7.8. After a transfusion, she did perk up. Now we are completing day 3 of antibody.

I’ll be honest I don’t feel like doing a post today. I am tired and suffering some burnout. And I am sure that Jesse is suffering the same burnout. I hate this place, and at the same time appreciate it. I wish we could do this treatment closer to home… as in we do it and go home to our bed and a second parent and sibling. I also hate cancer. And can’t understand, except to think there is corruption, why we don’t have an answer yet with the millions of dollars thrown at cancer research. Also why don’t we have a child size pole? Getting her in and out of the bathroom with this thing bites.

Today I had to deal with the nurse practitioner who can’t stand me. She brought Jesse some paint. I’m sure she asked… I was hoping she forgot. After she left Jesse ate some salad, and threw it up. We are trying pizza now. But maybe the fenegren will help that stay down.

The nurse from last night wrote her urine count in the throw up count. The attending nurse practitioner commented about the amount of throw up from last night. The day nurse was able to correct her because she realized what had happened.

Later on I went to patient services to see about mail. The manager behind the counter told me they had 32 voice mails this morning. She even told me that they are struggling to keep up. And said that if I stood down there too long, they’d put me to work. No problem. Might not like how I do it, but I’d try 🙂

Thank you Mom for the box with chips, pretzels, candy, and Doc McStuffins coloring book. Jesse enjoyed the chips and coloring. Thank you Jacklyn and CHKD for the cape, glasses, and Kind Bars. Thank you NC family for the card and present. Thank you Louise Marie for the present, stickers, and card. Thank you Brynn Paige for the card. Thank you Mt Pleasant Bible Study Group for the card. Thank you Shona, Shane, Mia, and Brain for the book and tracing kit. Jesse really enjoyed tracing.

At 12am, a new nurse woke me up to get Jesse to go to the bathroom. When she is taking chemo, they want her peeing every 2 hours. And being it was a he, I have a feeling that he didn’t feel comfortable with helping her because he kept telling me he couldn’t get her to wake up. Until 6am, he woke me every 2 hours to help Jesse. I am okay with them waking me to help Jesse. It is sometimes just easier.

I woke at 8am when her day nurse came into assess her. I asked her again about the emend aprepitant. I was hoping that she could tell me why it wasn’t compatible. She said she’d run it by the doctors. I decided to bug my brother. Turns out from what he told me and the pharmacists here say combining emend aprepitant and ifosphomide can cause renal trouble. Jesse is already having renal trouble because of them being enlarged. Bummer, but I would rather keep her safe. And we now have fenegren that Jesse can take. She threw up so much last night that they gave her a dose, and it really helped.

Jesse slept until 9am. Around 11am, the nurse started the premedications before the etopophos. Since Jesse reacted yesterday, the etopophos would have to run over 2 hours. While it was running, Jesse ate 2 bowls of cereal, drank a CapriSun, and a fruit cup. I am hoping it all stays down. Around 2pm, the etopophos finished. Since we had 8 minutes before the mesna could be infused, we had to heprin and clamp Jesse’s line.

After waiting 8 minutes, the nurse started the mesna. Mesna is to help protect Jesse’s bladder from the ifosphomide. A few minutes in Jesse began to cough and complain of throat itching, She then complained of having trouble breathing. The nurse immediately started oxygen and handed Jesse a mask. Jesse began to look a little freaked out by it. I stayed calm to keep her from freaking out more, which she kept lookig to me for my reaction. If I had reacted badly, then I am sure things would have gone worse. Funny that five minutes before she was laughing.

The nurse called the resident in to get him to look at Jesse since she was having trouble breathing. He looked at Jesse and asked her to move the oxygen mask away for a second. Jesse’s saturation level drop to 87. He then called the fellow to come take a look. They talked back and forth, decided it was the etopophos maybe and to give her benedryl.

Jesse need to go to the bathroom. While she was up, she started coughing. I called the nurse, she called the doctors, and they all came back to evaluate her. They then decided to give Jesse an albutriol treatment. Jesse kept saying to me that she never had to have oxygen to help her breath before. When she talked about it, she began to get a panicked look in her eye. I told her this is what can happen, but we were here to get help. And they did a good job keeping her safe.

The respiratory nurses arrived around 4 to give Jesse the treatment. At first she was really nervous to take the treatment, but they were able to show her how easy it was. The doctors stopped back in to see how things were going. Jesse commented that she felt much better. After they left, Jesse got up to go the bathroom. She complained of weakness and shook uncontrollably for 30 seconds. The nurse mentioned this can happen with the albutriol.

At 5pm, the nurse started the antibody. Everything has been delayed today because of the respiratory scare Jesse had. I am not sure if the ifosphomide has caused her nausea that she began feeling or the thought of the antibody. The antibody will finish around 9pm tonight. She has now decided to lay in the bed and listen to Scooby-Doo.