Jesse woke at 6:30am. She instantly asked me if we could go downstairs and eat in the hotel lobby. She is so excited to be able to do things that have been denied to her for so long. And it has pepped her up. She ate one and half muffins.

She also began asking me when Mike would arrive. It’s getting hard for Jesse to be separated from the family. And I agree. She is a different child at home. I wonder why that doesn’t play more into these kids’ treatments? If they are happier at home, why can’t things be done to help them get the treatment at home?

At 11am, Mike arrived. Jesse was so excited. Poor Mike was exhausted. She showed Mike her tick spots, which are looking pretty good today. Mike told me he was on a plane with a lady coming for a huge conference here at St Jude this weekend for the money donors. Yeah a ton of people filtering through the hospital as Jesse’s ANC is knocked to the ground.

About 11:30am, we went over so Mike could answer his donor questions and give blood for labs. Jesse needed to give a sterile urine sample.

While Mike and Jesse registered, I asked triage for a sterile urine kit. Then we went to the donor room for Mike’s appointment. While he answered questions, Jesse and I waited. A recruiting nurse came along. Very lively character. She and another nurse took Jesse to the ABC wall to get a Popsicle. Jesse walked the whole way there and back. We met them at the door.

She ate the Popsicle while Mike and I had lunch. Jesse is convinced that there is nothing she wants to eat in the cafeteria at St Jude. I have not been able to convenience her otherwise. Our clinic nurse called to ask if we knew about the sterile urine and to make sure Jesse got an arm band before 4pm today. Luckily we had both covered. I actually thought for a minute it was the nurse practitioner calling about something she’d forgotten.

After lunch, we went to triage to wait for Mike’s lab work appointment. Jesse was really excited to watch him get stuck. But when the time came for her to see it happen, she was covering her eyes. Once Mike’s labs were taken, we returned to the room to spend the last twenty minutes before Mike had to leave for his flight home. The van called at 1:45pm to say they were ready. This gets harder and harder for Jesse each time. She cried some downstairs, then was distracted by a lively boy in the elevator. But once we were in the room, she was in tears again.

Around 4:30, clinic called to say Jesse would be in room 2072. I am crossing my fingers this is a corner room with double windows. But this could change. We have to report over at 8pm. Tomorrow will start the chemo.

Tonight Jesse wanted pizza, but when we went downstairs to get the coupon , a group was serving dinner. Jesse was actually interested in eating the corn on the cob and spaghetti they served. Afterwards she played in the playroom and even went outside to play on the playground. She went up and down the steps several times. I am really proud of how active she has been today. I am hoping that this helps her with recovery this time.

Thank you Pam and Jimmy and Mike, Cindy, and Biscuit for your cards and well wishes. Thank you Aunt Phyllis for the support and stickers. Thank you Uncle Greg and Aunt Beverly for the support and note.

Jesse was due at clinic at 8am for labs. I figured they would want a sterile urine sample too. You have to prepare Jesse for those. She hates them because she has to been cleaned with betadine.

First the clinician took Jesse’s weight: 15.2 kg. I really think their scales are off here. Then her blood pressure: 126/80. Jesse doesn’t want to be at St Jude.

Afterwards the clinic nurse took Jesse’s blood for labs. I asked her about going home for recovery. I know she can’t give me an answer, but at least maybe she can put a bug in someone’s ear. I also asked her if Jesse needed to give a sterile urine sample. As she went to ask, I went to check the mail and get Jesse a snack card.

I was walking off the elevator, when I noticed a little girl in an orange and pink dress walking with our clinic nurse. It took me a second to realize it was Jesse. When she saw me, she jumped up and down telling me that she was finally released from isolation.

Jesse was so excited to walk with me to the cafe and get her own banana and snack pack. Then we returned to grab our stuff from the clinic room. After eating her breakfast, Jesse and I went to the Psychology Department. Since I have upgraded Jesse to my ipad, I wanted to donate her old ipad. The Psychology Department secretary had no record that the department was interested in it. She had to call someone. That person knew nothing about it either… so she told me I need to contact the first person I asked about donating it.

I called Child Life, who I had contacted first. Our Child Life specialist was surprised by the run around we had gotten. I shouldn’t have been. But she was extremely nice in coming to get it from me to figure out how to get it where it needed to go.

While we were waiting, I took Jesse to the school. Her teacher was really surprised to see her out of isolation. Jesse was really excited at the possibility of going to school with other kids. But 15 minutes before class started, clinic called to say they were ready to see her.

As we were sitting in clinic waiting, I happened to look at Jesse’s back. I saw a new freckle with a red spot. Crap. And even bigger crap because I said out loud, “Dang it, you have a tick!” The minute I said it I regretted it because Jesse started squalling like I was doing open surgery on her without sedation.

A few minutes later, the nurse practitioner came in. I asked her for alcohol wipes and tweezers. She looked at me puzzled. I explained Jesse has a tick, and this is the way I know to get them off. She commented that she had never seen a tick and had no idea how to take them off.

I took the first one off. It didn’t look like the head came completely with the tick. So I asked for a needle to scrape the rest out. The poor medical student with the nurse practitioner got a trail by fire. Jesse was screaming her head off, and I was calmly asking her to hold still so I could get it out.

Then I figured I should double check her all over. Found a second one on her butt. The medical student was asking me to please not find another one. The second one looked to have the head come out too, but I am feeling a little paranoid because I would hate for something to happen. Especially since Wednesday we are starting chemo.

Once we finished with the ticks, the nurse practitioner went over Jesse’s medicine list to get her ready for admission. Then she left to get the doctor. He came in at 11am catching me digging through the trash looking for the ticks because the nurses threw them away (found one). I wanted to keep them in case we need to have them tested.

We talked about radiation and getting Jesse home for recovery. Because Jesse is a relapse, he had no trouble with me taking her home. He even mentioned that she could leave if her ANC was 100 (which is 0). If this is the case, I will rent a car to bring Jesse home. The fewer people we are exposed to, the better.

He also told me that our radiation oncologist in Virginia was not releasing information to St Jude’s radiation oncologist. I get the feeling he really feels that St Jude is the best place for Jesse to have radiation. While I agreed with him in the moment due to Sentara not really wanting to deal with kids, I don’t think Jesse will be able to stand being away from home that long. And while I am not a fan of the radiation oncologist back home, I know that we will see our home oncologist and clinic nurse, who always have had Jesse’s best interests at heart.

He said the social worker was looking for us, but since we’d gone home they couldn’t get the release signed. After texting with Melinda, she suggested that I call Sentara’s radiation to see what I could get rolling. I talked to a very nice lady, who started calling St Jude to see what she could get done for us.

I also called our clinic at home. Turns out that our clinic nurse had sent the request to St Jude’s awhile ago, which is what I figured had happen. She sent it to someone here at St Jude, who passed it to someone else, who passed it to someone else… and well it didn’t get done.

Around 3pm, the social worker called us. And basically it came down to they didn’t understand CHKD is separate from Sentara. Once I explained this it made total sense for the release forms. We traveled over to hospital again. The social worker took us to the Medical Record Room in the basement where I signed the forms to allow both doctors to share information.

As we were leaving my phone rang. It was the nurse practitioner calling again. She’d called earlier telling me how I needed to get the radiation records released (half the information was misinformation). This time she was calling to tell me that I could stop giving Jesse sodium bicarbonate. Funny thing was we’d talked about Jesse’s medicine list earlier in the day… I listed all the drugs she is currently taking. Sodium bicarbonate is not one I listed. Jesse has not taken sodium bicarbonate in 2 weeks. Since we were in the building, we walked over to let them know.

Later she called again asking if Jesse was taking ativan for a “bad” reason (I am guessing she means anxiety?). I told her Jesse needs it nausea. Then she called at 5:30 saying they needed a sterile urine sample from Jesse. I had asked them at 8am if Jesse needed to give them a sterile urine sample. I told her we were not going back over there today. She said it was okay to wait until Tuesday. I am getting really tired of her disorganization.

At 6:30pm, Triage called me asking where we were. I told her at the Grizzlies. Turns out that the nurse practitioner put the order in. The triage nurse admitted to me that she had not looked to see if there was a note attached about us waiting for it till tomorrow. So I don’t know if there was a note or not, but the triage nurse told me she would add a note. This also raises red flags about their computer system. People are either finding it too complicated to fully look at things or too time consuming.

I am a little concerned that even though they have released Jesse from isolation someone is going to come along and put her back in isolation just because they haven’t got this clean sample yet. They have given her a taste of freedom. She is going to be crushed if this happens.

I am impressed with how quickly our home radiation doctor’s office got on the ball to see what needed to be done from their end to get Jesse’s radiation figured out. I am tired of dealing with incompetent people. Yes we will have to drive back and forth, but we will be with people who are organized and act like they want Jesse to survive. Not like a number shuffled through the system.

Thank you Barabara, Alan, and Skilly for the Easter basket. Jesse loves the egg craft. Thank you Coco, Kathy, and Malakai for the food and Easter basket. Jesse is enjoying the art kit.

Thank you Elsie and J.C. for the Easter package. Thank you Mom for the food. Jesse ate the chips. Thank you Robert, Loretta, and Timothy for the books and goodies. Thank you Inez for the package. Thank you Mt Pleasant Baptist Church Tuesday Morning Bible Group for the stickers. Thank you Tracy, Shelia, Jessica, Emma, Kaydee, and Sis for the package of goodies.

Thank you Cindy, Mike, and Biscuit for the Groucho Marx card. Jesse got a kick out of the glasses. Thank you Jim and Jackie for your card.

Jesse did receive other cards. I have held those because she opened things so fast today I couldn’t keep up. And it will give her something to look forward to opening tomorrow. 🙂

Day 128

I noticed that St Jude has once again scheduled Jesse to see the doctor at the same time as my staff meeting. I could feel the anger rising. They have no regard for the fact I would like to work. I sent them a message asking to have the time moved to 9:30 or 9:45.

The message a received in return further cements the prison feeling. The writer told me they try to accomadate the time I have asked for. Really you do? Then why do you keep scheduling over it like it is nothing. Then she told me this was the first time this has happened. Overall it was a pretentiously rude email encapsulating the attitude we have received while here.

I know the people here think that they are doing great works, but they totally lack empathy and fail to have a full understanding of what families are going through.

Wednesday evening we went to Emileigh’s softball practice. Then Emileigh and Landan spent the night with us so they could catch the bus with Chris and my Mom in the morning.

Day 129

Jesse and I headed to clinic at CHKD. Turns out Jesse need blood because her red blood was 7.8. Our home clinic nurse told Jesse she was sorry to keep her away from home. Jesse looked at her like she had made the strangest statement. Then she responded with “But I am home.”

Plus at CHKD, people stop in to see her. The social worker was really nice to spend several hours with Jesse each time we were there. We don’t see that kind of service at St Jude. St Jude treats me as an obstacle in Jesse’s care. CHKD treats me like a partner in her care.

By 3:15pm, we were on the way back to Williamsburg. We skated in the door fast enough for me to grab a shower and head out for Chris’ softball practice. It was so nice to be able to be there watching her practice. Her Uncle Tommy and Aunt Debbie help coach the team. Plus her cousin plays on the team. Chris’s uncle coached Mike when Mike was 4. I think this will be a good experience for Chris in learning to pay attention.

Thank you Mom for staying at the house to get Chris off the bus.

Afterwards we took the kids all to Chili’s in Williamsburg. Definitely no place like home. So good to eat there.

Day 130

Jesse and I put the kids on the bus. Then I did some work while she played. In the evening, we hung out around the house. The kids played outside and inside until everyone zonked.

Day 131

In the morning, Mike had to work. Melinda and I took the kids to Honey Butters. Yum. Someone was extremely nice and paid for our meal. The restaurant didn’t make it clear if it was them or someone else in the restaurant. We are very humbled by the graciousness.

We ran some errands, then I returned home to finish packing. I packed only to hopefully have to stay at the prison for Round 6. I am really going to push for Jesse to be home for recovery. I noticed a significant difference in her eating at home. Also instead of sleeping till 10am because she is in the dark here, she got up by 7:30 or 8. I think access to natural sunlight is huge. Along with access to her stuff and family.

Also Jesse actually gets a break from the hospital when we go to CHKD. We aren’t dragged in everyday.

In the afternoon, Mike and Jimmy took the kids fishing. From the sounds of things, it was quite the event 🙂 Melinda and I rented kayaks. We rode up to the hole in the wall (the bridge on the Colonial Parkway leading to Jamestown Island.) We tried to ride into the James River, but it was too rough for us.

Day 132

7am came way too fast. Mike and Chris took us to the airport in Newport News. For some reason when we checked in the counter couldn’t get Jesse and I on the same seat for the flight from Charlotte to Memphis. The woman was extremely apologetic because she could see Jesse’s condition.

We left Mike and Chris at the checkpoint. Luckily there was only 2 other couples going through behind us because the ice bricks I was carrying to keep Jesse’s medicine cold caused an extra security check.

Our tickets put us at the back of the plane. I have no problem with this because we can get off the plane last. Plus our layover in Charlotte was 2.5 hours. I am okay with that too because I can get Jesse something to eat.

After grabbing a bite in Charlotte, we sat at the gate waiting for the clerk to arrive. She came about 45 minutes before the plan was to borad. As I walked up to the counter, there was a lady at the counter on the phone and a man behind her.

The clerk called the man to come up. He motioned to the lady on the phone being there first. The clerk was obviously ticked the woman was on the phone because she was short with saying she was on the phone. The man was asking for seat assignments because his ticket had none. The clerk testily replied the plan was full and she couldn’t guarantee anything.

By this time the woman was off the phone. She asked the clerk her question, received a curt answer, and then it was my turn. I started with asking to be seated with my 5 year old daughter because Jesse was in row 9 and I was in 20. The clerk responded with even though she was 5, she couldn’t change the seating. I don’t like playing the cancer card, but I know Jesse would be traumatized to sit without me. I looked at her, “Ma’am, we are going to St Jude for her final chemo treatment. If you want to leave her in the other seat I can give her seatmate her medicines to take.” That seemed really effective in getting the seat changed. Why make things so difficult? And why do airlines, who can see her age, seat her separately from me?

Our descent into Memphis was bumpy because of a thunderstorm, which did cause us to skid on the runway a tiny bit. People on the plane were complaining about the crazy weather in Memphis lately. I think its a sign we don’t belong here. As we were deborading, a gentleman gave Jesse a pin for the US Secret Service. I could tell that he’d wanted to talk with us when we’d boarded.

While we were getting our luggage, I called the cab company. The last time I got a cab from the airport, the man drving acted like it was the biggest hassle, and we had done the wrong thing. Funny enough we ended up with the same guy, who told me that since we had the voucher from St Jude I didn’t need to call. Can’t win.

Also waiting on luggage was a bone marrow transplant nurse. She mentioned that hopefully we would not run into her. I told her actually next week we might. Those nurses are the ones that give Jesse Mike’s natural killer cells. She agreed with me on getting Jesse home. And I learned from her that kids on steroids might be carrying viruses and other stuff, but the steroids mask it. Also parents bring in siblings who are sick all the time. I learned this because I told her I was disgusted by the tour groups coming in. Isolation I think is keeping Jesse safer. I would hate to see what would happen if we had been out and exposed to more stuff.

Isolation rooms are full at St Jude, so we have been placed on the second floor. They have totally messed up! I have access to 2 huge windows. Jesse wants to me get her a pizza card for dinner tonight. I have noticed to that since returning Jesse has begun to complain of pains again and being tired. I can understand the tiredness from traveling today. I am wondering if she is sliding into “sick” mode.

This afternoon I checked Jesse’s schedule. Yet again they have schedule an appoint with our St Jude oncologist at the time of my staff meeting. I am so tired of the disrespect. And so I clicked the reschedule button. I told them I was not happy having this time scheduled over like it was nothing. I need to keep working so Jesse has a home to return to. So that I can help Mike.

On this last Monday, it didn’t fail. They called me at 10am ET/ 9am CT. Right at the time of my staff meeting. Never fails.

I also sent an email to our clinic nurse asking to meet with the radiation oncologist. I want to meet with him next week. I want to ask about Radiation or Proton therapy. We have access to both in Hampton Roads. I just want an idea of what he is thinking.

I forgot in my last post: Thank you Mike’s co-workers/ extended family for the jelly bean raffle. We really appreciate it and everything you have done to help us.

Jesse is bummed that she didn’t get to go to Chris’ guitar lesson. But we hope the teacher’s siblings feel better really soon 🙂

Day 121

Jesse and I headed over to clinic at 7:30am. If they pushed back chemo, I wanted to get Jesse and I on the road as soon as possible. We need a break from being treated as incomptent and being shoved into rooms with barely any windows.

The clinic nurses got Jesse’s labs and tried to get the nurse practitioner to see us, but there was a new patient arriving. And when a new patient arrives that is where the primary focus is (which I am okay with because the new family needs it). Around 10:30am, she finally stuck her head in the door to tell me they were waiting on a reply email from the travel office about us flying home. Then she mentioned that Jesse’s platelets were at 15, and they were going to wait until Thursday to transfuse.

My understanding has always been that when platelets are 15, they give a transfusion. I immediately told her we didn’t need to wait on the travel office because I was driving. She then told me that I couldn’t drive that far. I rebutted with I drove out here. I also told her we were not waiting til Thursday to transfuse platelets (good call on my part because they still aren’t coming up on their own). I told her to order Jesse a transfusion of platelets and after that we were leaving.

She then told me the travel office wouldn’t fly us back. And we would have to drive back if they wouldn’t. I told her no problem. I can drive. After she left, I called the travel office. The lady was super nice. “Fly you back on the 27th? No problem.” I told the nurse practitioner this, and also reiterated that we want to go home for recovery after round 6. The main oncologist has told us we’d have 48 hours to get home if we did that. This is why I figured now was the time to get my car home. Jesse feels good enough to make that ride.

At 11:30pm, they finally moved us to the medicine room. Finally at 12:15, they began transfusing the half bag of platelets. By 1pm, we were out the door. By 1:30pm, the car was loaded, and Jesse and I were on the road.

We stopped in Nashville about 5:30 for Jesse to go to the bathroom and get some dinner. Plus I needed to give her her GM-CSF shot. Then we stopped again in Bristol around 10pm, Gordonsville at 1am, and hit our driveway at 3:30am. Jesse was so excited to be home that she kept her dad up the rest of the night. Mike was surprised to see us. He had told me to stop and get a hotel room, but I was enjoying the night driving. Plus Jesse slept 8 hours of it, therefore making it easier on her.

Day 122

Jesse and I spent Thursday unpacking and rearranging. We took the car to the car wash where a little baby just stared and stared at Jesse. I didn’t make her wear the mask in the car wash because there were just a few people in the room and her ANC on Wednesday was 1200.

After that we went to Trader Joe’s where I asked her to wear the mask. The same baby was there, and started squalling when she saw Jesse. Jesse handled it really well.

Day 123

We made the trip down to CHKD. On our way down I realized that Fedex was coming with Jesse’s ethanol. Since it is coming from the pharmacy, they would not leave it without signature. And they would deliver it before 12pm. First I called St Jude to see if I could get a tracking number. Then I called Fedex. The first lady said they would drop it at a pickup location in Williamsburg. My thought was Yes!. Then another lady called and said they couldn’t do that. We could figure out where the driver was after 12pm, then see when he’d return to Hampton. Then I could come to the station on Magraduer to get it. Talking to her I found out the box was going to Meme and Papa’s. Normally they are home, but this morning they had errands.

I asked the lady to let me trying to call them to see if they were home. No luck. I called back to Fedex, this time getting some woman who could just spout off their procedures. After thinking for a minute, I decided I was going to have to play the cancer card. I think when I called this time, I got the same lady. She said she’d talk to someone about calling the driver to see where he was. They couldn’t reach him, so she told me I would have to call back after 12pm to see where his location was.

Jesse and I had been hoping to get back before 3pm to go with Jimmy, Melinda, Emileigh, Chris, and Landan to Sweet Frogs. Once I was at clinic, I sent her a text to let her know that I’d have to go back to Hampton to get the medicine instead. Jimmy and Melinda offered to go wait at Meme and Papa’s for the Fedex guy. When they arrived, he had not been by.

Everyone in clinic was super nice to stop by and see us in the isolation room. Our home oncologist told me that our St Jude main oncologist sent him an email saying that I was leaving in an hour. I told him that I was fed up with not being communicated with. I don’t require a lot of time, just please tell me what the plan is.

He also said that he was okay with looking after Jesse if she came home to recover from round 6. I am concerned that St Jude might not allow it because of study labs, but we’ll have to see. I really hope so because I have not heard her laugh at St Jude the way she laughed at CHKD on Friday.

Jesse’s ANC was up to 1876, platelets were at 34.

I checked in with Melinda to see what was happening because it was after 12pm. No driver, no box of ethanol. I called Fedex, and a guy told me it would be 6:45pm before he returned and the center closed at 7.

About 1pm, Jimmy and Melinda needed to leave. As they were passing the Honda dealership, they saw him. I really appreciate them pulling in and talking to the driver. The driver called his supervisor, and I guess because I had been calling, they allowed them to get the medicine. I am extremely thankful for them doing that. Melinda joked that she should have gotten a selfie with the Fedex truck. 🙂

After a transfusion we headed back to Williamsburg. Traffic was horrid, and it took us 2 hours. But I would rather deal with that than be in Memphis. Jesse talked to me most of the ride. We even got into a discussion about her kidneys and why I am always chasing her to go to the bathroom.

Day 124

It’s clear I have issues. I was not happy until I cleaned the house to my specifications. Plus I went through Jesse’s clothes. She actually has outgrown some things. She’s now 105cm (41.33 inches).

Later Jesse and Chris were able to go to an Easter egg hunt. Jesse ate 3 pieces of pizza. Thank you Barbara and Allan. The girls had a blast!

Day 125

The girls spent the night with Jimmy and Melinda. Mike and I enjoyed having some time to ourselves. In the afternoon, my brother, Robert, and his wife, Raven, and 2 kids, Joel and Charlotte, came to visit. Really good to see them. The kids had a blast playing together, though Jesse decided that Uncle Bert was fun to stay and harass.

Jesse’s teacher, Mrs. Perry, stopped by to visit. Thank you for the goodies. 🙂

My mom and Louise Marie stopped by later. Thank you Mt Pleasant Baptist Church for the support. Thank you Mt Pleasant RAs and GAs for Jesse’s trophy and car.

In the evening, we went down to Meme and Papa’s to see Mike’s side of the family. We didn’t stay long because Jesse was exhausted.

Day 126

Because I miscalculated on the amount of vials of GM-CSF I have, I took Jesse to clinic to get her counts. Luckily her ANC was 2659. To stop using GM-CSF, it needs to be over 2000. Jesse was extremely excited. Her blood was 8.1 and platelets 38. Our oncologist suggested waiting till Thursday to see if she needs any products. We were supposed to return on Tuesday, but he said to wait till Thursday. (Our clinic nurse suggested it to him 🙂 Love her to pieces she is the best!)

The other good news is Jesse gained another .22lbs over the weekend. Right now she weighs 14.8kg (32.56 lbs). She has been eating like crazy too. It is hard for her to eat because a lot of the food tastes like metal.

Jesse and I were back home by 12. Uncle Greg stopped by later. Thank you and Aunt Beverly for the flowers. Jesse has them on her dresser. I appreciate they are fake 🙂

Once homework was done for both girls, we went to Emileigh’s softball practice. Landan and Jesse enjoyed climbing the bleachers. Jesse told Landan what to do and not do. She is a bossy little thing on occasion.

Thank you Mom for putting the kids on the bus.

Day 127

Wow I have been delinquent in posting. Today Jesse is hanging out with Melinda while I get some work done. Plus I got to go for a run! (I have shoe issues… so I ran half of it barefoot. Can’t find a pair that doesn’t rub the bottom or the tops of my feet in the wrong ways). We were supposed to come by the school, but Melinda was off today, and I need to get caught up on so many things. We are planning to come by Wednesday.

She and I are going to try to go to Christine’s guitar lesson. Chris has really enjoyed having us home, but she is starting to have a hard time with us returning. I wish we didn’t have to either because Chris’ first game is next Monday. Then on April 30th, she has a school play. It bites to miss all of those events in her life.

She told Mike last night she wished Jesse never had cancer.

I let Jesse sleep till she woke up this morning. At 9am, she sat up. Funny, I had actually finished my workout and turned the channel to Disney while I grabbed a shower.

After I showered, Jesse asked for breakfast. She ate a bowl of cereal, then wanted yogurt with gluten free cereal. She ate half of that. While she ate, she laughed and picked on me. I wondered to myself if she was on the upswing with her counts.

At 12:45pm, the hotel maid stopped by. I asked her to come back since Jesse and I were going to the hospital at 1:15. We arrived at the isolation doors at 1:20pm. The isolation nurse was not there, so I had to call clinic to come fetch us. Another family was waiting for a taxi to come pick them up. After 20 minutes of waiting, the dad suggested I call clinic again. I told them that I was hesitant to do that. The clinician seems to be the type with an occasional axe to grind. I wasn’t sure if she was making us wait because we had torqued her off in some way.

We struck up a conversation with the family who has been here since February from Puerto Rico. Poor guys. I really hope they are able to go home soon and everything turns out as they hope and dream. As we were talking my phone rang, it was the clinic nurse asking where we were. See our appointment was for 1:30pm… and by this time it was 1:45pm.

She instantly came and got us, and was very apologetic we had to wait so long. Turns out there was a lack of communication about Jesse. She saw that Jesse’s bracelet had been printed. So she texted the clinician to take Jesse’s vitals. Meanwhile, the secretary whom I had called, texted the clinician that we were in the isolation holding to fetch us. And the clinician was at lunch.

When our appointment time passed with no sign of us, the clinic nurse thought we might have gone for the ultrasound first. She called there looking for Jesse. Then she called other places looking for us before finally just calling me.

The clinic nurse took us to clinic, where she drew Jesse’s labs. After this was done, I ran to grab Jesse’s mail, snack bag, drink, and something for me to eat. As I returned, the clinic nurse was putting a gown on Jesse because ultrasound was ready. I was surprised because the schedule said 2:30pm, and it was 2pm.

At ultrasound, the technicians scanned Jesse’s kidneys, bladder, and right groin. Jesse asked why. I told her to make sure that her renal function was looking okay. Within 10 minutes she was done, and we were on the way back to clinic to wait for the doctor.

Around 3pm, the clinic nurse handed me part of Jesse’s counts. Her red blood was 7.5. Didn’t see that coming, especially with how peppy she has acted today. Her ANC has only crawled to 700. Her white blood count was 1.3. Her platelets had not returned yet.

The nurse practitioner stopped in. I kept it short with her. Just want to know the facts. She said that she didn’t know anything except Jesse needed blood. Her platelets came back at 21, but the main oncologist wanted to wait for tomorrow to see if they came up on their own. I asked her about the sodium bicarbonate Jesse is taking. She said she was going to talk with the main oncologist.

A few minutes later the main oncologist stuck his head in the door. I was surprised to see him because today is not his clinic day. Turns out he will be gone Thursday and Monday of next week, which might be why he stuck his head in the door today.

He told me that her renal ultrasound showed stability in her kidneys, and actually some shrinkage on one. For her right groin, the lymph nodes have shrunk. Yeah! Hopefully we can keep them this way.

He did mention that since her ANC is taking some time to crawl up, we might not be able to start chemo next Tuesday as planned. Tomorrow’s labs will be the deciding factor. If she is not making a substantial jump, we will push it back. And I am not sure how far back we will have to push it because it will depend on when transplant has an opening. And it will depend on Jesse’s recovery.

The nurse practitioner said she thought Jesse’s numbers would climb. The main oncologist told her he didn’t think they would. And I have to agree with him after seeing her current trend. I commented this was the 13th round of chemo Jesse has had (12th actually), and her comment was that I know it all. Compared to her when it comes to Jesse, I have a better idea.

Around 3:30pm, as I was talking to Mom it dawned on me that I needed to move Jesse’s appointments for tomorrow up in time. They were very willing to move Jesse to 7:30am. If she needs platelets, we can get that done earlier in the day.

Afterwards the clinician came to take us out. But I reminder her Jesse had to go to the Medicine Room for blood. She took us over, and we waited for 45 minutes before I reached the end of my waiting point. I walked out and asked what the rumor was. I wish the nurses would at least walk in when we arrive and say, “Hi, I’m so and so and I’ll be your nurse for today.”

The nurse came in with Benedryal and Tylenol at 4:45pm. Jesse took the Tylenol and her nitrofurnation. The nurse started the Benedryal. It was supposed to run over 20 minutes, but at 10 minutes Fred the IV pump beeped he was done. This was a little concerning to me and the nurse. She had just ordered the blood. So I took the chance to run for food and Jesse’s GM-CSF before we started blood. I am not sure she got all the Benedryal… and I want to be here if something goes wrong.

I ran into another neuroblastoma family in the hallway. They said their daughter recovered to 2000 ANC with the shot, then plummeted to 300. This is the first time (and hopefully the only time) this child has had neuroblastoma. The doctor told them that by the time kids reach round 5 of treatment, their bone marrow has really taken a beating. This combined with the length it has taken Jesse to recover is going to make me push for recovery of round 6 at home. Jesse needs her dad and sister, and so do I. Plus I need to get her access to food she will eat. She vehemently refuses to eat most of the food here.

I returned just in time because the blood just arrived. I am really sure that Oscar the Grouch has been doing his part again by donating blood. Jesse became really cross 15 minutes into the infusion. We are now near the end, and she is starting to drop some of the attitude. Yeah now she is talking on a banana.

Thank you James City County 911 Dispatchers for the box of goodies. Jesse has really enjoyed playing with them while we were waiting for blood. Thank you Mom for the picture to color and stickers.

Thank you Joseph for the horse stickers. Jesse really likes them. Thank you Mt Pleasant Baptist Church Tuesday Morning Bible Study for the well wishes and magnet. Thank you NC family for the card and well wishes. Thank you Miriam for your note and well wishes. Thank you James and Pam for your card and well wishes. They all mean a lot to Jesse and myself.

Day 117

We went over at 9am for labs to the Medicine Room. After waiting an hour, the results were back. Jesse’s ANC was still 100. Then we had to wait for the doctor to come see here. He was in interesting character. Then we returned to the Grizzlies House to wait for the next day.

Day 118

At 9am, Jesse and I were back at the Medicine Room. At 10:30am, the nurse stuck her head in the door and apologized for us having to wait so long. The doctor came in around 10:45. He was surprised that Jesse answered questions about her medical condition and participated in the discussion.

Afterwards, Jesse and I returned to the Grizzlies to wait for Monday.

Day 119

We headed over at 7:45am for labs. I asked them for a piece of paper, tape, and pen to write a “Do Not Disturb between 9 to 9:30” sign. Jesse asked to write the sign. It took some explaining to the clinic nurse to get her to understand that I just need 30 minutes uninterrupted to get my weekly marching orders from the boss.

She took Jesse labs, then left. I took Jesse out to the scale: 14.6kg. Yeah at least she is gaining some weight. Then I went to get her something to drink to take her medicines with.

At 8:45am, the nurse practitioner has to come in. Can’t wait till 9:30… She asked about the note, and from my tone I guess she figured out I am angry. And that tone deterred her from the baby talk crap. She wanted to send in the main oncologist at 8:55. I told her that I did not want to see anyone until after 9:30. And what good does it do to see him when her count information is not back? Past experiences have proven that to be a total waste of time.

This didn’t compute with her at all. I had to repeat myself again. I am so tired of people not listening to me. Sorry I don’t meet your exception of a human or whatever, but at least be courteous to me as I have tried to be to you.

At 9:30, the main oncologist came in. He acted a little hot under the collar that I deterred him from coming in at 9. He was short with me, but at least nice to Jesse. I pointed out Jesse’s swelling. Since he was looking at her lying down, he felt it was better. I told him about her complaining when she peed twice yesterday. However he didn’t really seem to care about that either.

He commented that tomorrow she’ll have an ultrasound. We have to come over for labs because Jesse’s ANC is 400 still. It was 400 yesterday and seems to be stuck there. Her white blood count did increase to .9 from .8 yesterday. And she is maintaining on the red blood at 8.1. Her platelets dropped fro 51 to 33.

I asked about when the plan for chemo would be. I need to know what the plan is so I can tell Mike, so he can make arrangements to get here. There is an email going around about his rescheduling, but no one can tell me anything yet. And as I called it, it was Monday before the doctor bothered to tell me. Is it crazy to feel really disrespected by this? Two seconds would be all it took on Friday for them to tell me: “Hey, we are pushing Jesse’s last round back a week.”

He then commented that we were done for the day. I told him no we have school. His words to me were “You can’t tie up the room waiting.” He then said he was going to call the school to see if we couldn’t get her teacher to come sooner. I told him at 10am she is teaching the kindergartens who aren’t in isolation.

He didn’t listen to me at all. He had the secretary call to harass the poor teacher. Then the clinician, who was trying to mean well, came and offered to get the teacher to come earlier. I gave up and just let her go off and call. I can’t get anyone around here to listen to me.

The secretary came in saying the teacher said I could run down and get Jesse’s school work. Jesse looked at me with the look of “please don’t.” I told the secretary we would wait for the teacher. Jesse thanked me after she left. Jesse really enjoys the teacher here. And I think the 3 hours she gets with her a week means a lot.

The teacher arrived at 11. She is super nice, and obviously seen this happen all the time. She figured that I didn’t really want to leave when I didn’t come get the school work.

Tomorrow we have to return to this blanked-blank hole for labs and an ultrasound. They have scheduled it for the afternoon. Wonder how long we’ll be sitting around waiting. But at least we are seeing an oncologist who in the past has treated us like we are humans.

This afternoon I took some time to check the calendar of when Jesse needed blood and platelets. Having to stay 2 days longer for the natural killer cells will actually put Jesse 24 hours from 0 ANC, if not at 0 ANC because she probably will not recover as high before we start Round 6.

And she seemed to need platelets every other day during this round. I am afraid at this point we might not be able to leave. That we’ll be trapped here another month while waiting for her ANC to recover and for scans to be completed. Another month will mean that we have to return to RMH. Another month of being treated like I should not have had children. Another month of being talked to in baby talk or a dog waiting for a treat voice pitch. Well at this point another 5 weeks 🙁 Then it will depend on how radiation is going to happen as to where we have to do that.

Today Jesse and I went over to clinic at 9 am for labs. Until her ANC reaches 500, we have to be seen every day. Yipee 🙁

The clinic nurse and clinician worked to get Jesse’s vitals taken quickly so that we could get out of the building before too long. I appreciate their efforts, but given Jesse’s platelet count yesterday, I didn’t think that was going to happen.

After an hour, the nurse practitioner came in. “Is she peeing and poopying?” Asked in a high pitch voice with the style of baby talk. Really what is this woman’s deal? I looked at her in disgust, and told her that yes Jesse is going to the bathroom. She talked about Jesse starting chemo for round 6 on Tuesday. I told her that I didn’t think that would be possible because of what the main oncologist told us. Either he didn’t talk with her about Jesse or he told her and she failed to listen.

She then said she talk to the main oncologist. Then she said we’d be back on Monday. I told her no we have to come back every day that Jesse’s ANC is below 500. It then dawned on her she is supposed to exam Jesse every day that her ANC is below 500. I am so tired of this woman. She is beyond incompetent in my opinion. But I don’t know how to tactfully ask for another nurse practitioner without worrying about diminishing Jesse’s level of care or having to deal with cronyism.

While she was examining Jesse, she again asked in the baby talk if Jesse was going to the bathroom. She then commented on how well Jesse speaks. That she sounds like a little adult. I should have taken the opportunity then to say, “Yes, because I have never spoke in baby talk to her. I hated it as a child. I hate it as an adult.” But I didn’t. I really want to point out how unprofessional it makes her sound. Yes I can’t stand her.

As she was examining Jesse, the clinic nurse stuck her head in the door. Jesse’s platelets are at 22. The nurse practitioner started to flake on giving her platelets. So I made the decision for her. I told her needed to go ahead and have them done today. Might as well get it done today because there are probably more people in the lab to get the platelets ready.

As for her other counts: red blood 9.1, ANC 100, white blood cell 0.3, and weight 14.4kg.

She left to get the order in for platelets, get another doctor to come examine her (not sure why), and check about the plans for round 6. Do you think she returned to let me know what the plans are? I luckily caught the clinic nurse just after she overheard the nurse practitioner and our main doctor decide to move round 6 back a week. Wow so glad they could let me know. Thanks guys. Just more proof that I am viewed by them as someone who shouldn’t be allowed to have kids.

We still do not know if round 6 will happen. Next week will be trying to see the urologist and watch Jesse’s groin to see what happens when her ANC returns. We might even have scans. At this point, I don’t really know. And with the level of communication I am getting, I might find out the day of if round 6 will happen or not.

About 11:10, we were moved from the clinic to the medicine room for the platelet transfusion. We sat for 30 minutes before we saw anyone to start the premeds. Fortunately they are giving Jesse a whole bag of platelets. She does really need it in my opinion because she lost a tooth in clinic this morning. It took awhile for her to stop bleeding.

At 2pm, the platelets finished transfusion. We sat listening to the machine beep for ten minutes before a nurse rushed in. She said that everything happened at once. She unhooked Jesse from the IV pump. Instead of walking us out, she went to get someone else to do it. I don’t get it. She was already dressed in the gown. All she had to do was walk us around the corner, and out the door. Instead we had to wait another 5 minutes. This delayed me giving Jesse her dose of cefepime by 30 minutes in total.

We returned to the Grizzlies House. I hooked Jesse to her cefepime. For some reason it is taking it an hour to infuse versus the 30 minutes on the instructions. Once that finished, I changed Jesse’s tape and claves. Then I put the ethanol/ placebo in to set for 2 hours. And Jesse took dose 3 of the day of nitrofurnation.

About 5pm, the annoying automated lady called to let us know Jesse has an appointment in the Medicine Room Sunday morning at 9am. I looked online to see when her Saturday appointment was scheduled for. Then I looked at Monday. I am so hot.

I have asked this place for Monday at 9am for 30 minutes to be my time. I have a staff meeting at that time. I have only asked them for this one time. That horrid nurse practitioner scheduled Jesse’s Monday appointment with her main oncologist at 9am. It was in the system, and she just scheduled over it. And what really burns me up. Do you actually think we will see them at 9am? Nope it’ll be at 9:30 or 10. I wish there was some way I could schedule her for things over top of specific times that she has asked for. See how she likes it. I have told her repeatedly that I am working and have asked for that time for a reason.

And because of her treatment of us today, I am going to push harder to get back to Virginia and under our home oncologist. I can’t take much more of her rudeness without blowing a gasket and getting us permanently banned from St Jude. This would not be good for Jesse in the long run. We will have to return for scans, but the less I have to deal with that “person,” the better.

Yes I know Jesse’s care is important. But there is no reason her Monday appointment couldn’t have been scheduled for 10am. For the last 3 weeks, they have been scheduled for 10:30am on Mondays. This is convenient for me. And it is more convenient for Jesse because she can sleep longer. The child is not a morning person. I talked to Mike. He suggested that I tell them on Monday from 9 to 9:30am, they may not come talk to me. Sounds like a plan.

Jesse has another dose of nitrofurnation at 8pm, then cefepime at 10.

Day 114

This morning Mike and Chris left at 8 to head back to Virginia. It’s always hard to watch them go. And I think getting harder.

Hopefully we’ll get out later today and not have to deal with the “I know more than thou, even though I have no kids and I’m 26” attitude of the nurse. Just treat me as an equal in Jesse’s care and not like a person who shouldn’t be allowed to have kids. Also don’t come in with fake attitude and look down on my because I got McDonald’s for my kid. She weighs 14.2kg (31.24 lbs). I am trying to get her to eat anything… and you aren’t in the room witnessing the battle of “you need to eat” vs “I don’t want to eat because the food here taste like metal.”

The nurse practitioner came in shortly after Mike and Chris left. She looked at Jesse’s groin. To me it looks to be swelling again, and the nurse practitioner agreed. Infectious Disease has okayed clydamicin, but we are concerned to use it for 2 main reasons. 1 is diahrrea. 2 is C. diff. We do not want to cause anything to let that run wild in her body. The nurse practitioner recommended we do an ultrasound when Jesse’s counts recover more.

Today her ANC has finally reached 100. Red blood is at 9, platelets are 65, and white blood count is 0.2. The swelling might be a sign of infections. The ultrasound will allow them to measure those lymph nodes again.

The nurse practitioner also mentioned her goal today was to see if the attending would let us leave since we are staying at the Grizzlies House. I am not holding her to that. If we do go, Jesse will be on eclipse cefepime (that’s the right spelling of sephlapin). And we are looking at taking nitrofurnation for months now.

Around 11am, our insurance company representative called. Yeah. I am not sure if I believe her when she says that they will do whatever they can to help us. Then says she understand what we are dealing with because she is a mom. Do you really? Tonight you will go home and your kids will get up tomorrow without having to go over to see the doctor. And needless to say I do not believe them in anyway shape or form that they would do whatever they could to help us. The only reason they are offering that is because we are at St Jude, and they probably have some deal worked out that is good for their bottom line.

By 1:30pm, we were done with the ethanol dwells for Wednesday. The nurse practitioner came by to see what we’d need outpatient. The plan is to let Jesse out. And until her ANC reaches 500, we have to go to clinic everyday. She will also stay on the cefepime until she reaches 500. This needs to be done as eclipses.

She also told us that the urine we collected sterile today counts as sample 1 if it comes back clean. Meaning next week will be sample 2. If that returns clean, we’ll be out of isolation… and more than likely back to the boarding house 🙁 I told the nurse practitioner that being in isolation was far safer for Jesse having no ANC. There were at least 4 charter bus loads of people here yesterday touring St Jude. How many of them had the sniffles but felt they needed to come anyway since they booked this trip? Why in the world would you come tour the inside of a hospital where people are trying to fight cancer and have no ANC? Why would you come see people when they are looking so sick, missing limbs, and have visible surgery scars? Do they get a feeling of doing good because they donate here and then tour this place? Why can’t they give without having to come and see and bring what ever disease they might be carrying with them? There are times that some of them make me feel like an animal at the zoo.

I happened to pass the doctors in the hall. And I have a feeling that since we spoke there, they aren’t coming in here. The attending commented that I was the type to not sleep a whole lot. I told him that the minute clinic says I can return to Virginia, I will drive all night to get there. I will not stay in this place one minute longer. They mentioned they would be by once they knew all the details. (will be surprised if we see them). They plan to watch the swelling over the next several days to see what happens as her ANC increases.

The specialty pharmacy called to make sure we are at the Grizzilies so they send the medicine to the right place. The nurse popped her head in and asked if a tone of disbelief if I have ever done eclipses. I just nodded my head. I am so tired of being looked down on, especially by people with no idea of what I know or where I have been. There needs to be a note in the computer detailing what I know. I have had to tell them every morning and night to not give her Zantac. Jesse only takes that when she is doing the antibody.

So now we are waiting, waiting, waiting. I have a feeling they won’t let us leave till after I give her her shot at 6pm (because I am not capable of doing that on my own either in their minds.)

Day 115

Yep, we weren’t able to leave until the shot was done. Jesse and I returned to our room at the Grizzlies.

This morning we went over to get her labs done. We arrived at 9am. From the clinician, we found out there is another child in isolation as of yesterday. Poor kid came for scans and picked up the flu in the airport. Great, just great.

Jesse got really bored, really quick waiting for her blood counts to come back. At 11am, her teacher arrived. I took this chance to run get Jesse a snack bag since she was actually saying she was hungry. The only thing she eats from the bag is the Goldfish. Plus I needed to renew our room at the Grizzlies since we have not been told we are out of isolation yet. (I don’t want to go back to RMH. Do not want to go back to RMH.)

When I returned the teacher and Jesse told me a doctor had actually put on the gown and came in the room to see us. Since I had run into the nurse practitioner in the hall (who obviously wanted to avoid me since she didn’t have the FLMA for Mike done yet… and for me the least of our concerns), I knew a resident was with them today.

The resident returned a few minutes later. Great kid. He actually treated me like an equal in Jesse’s care. And God bless him, he actually said at 11:30am he was going to get the main oncologist. I warned him that he might be at lunch. The teacher was laughing after he left. And since I was feeling like a smart Alec I quipped that the poor kid was probably going to come back without body parts for interrupting lunch.

To my surprise I could hear the main oncologist in the hall talking about why Jesse was still in isolation. Then he actually came in, talked with Jesse, checked her over, and asked if I had any questions. He was again extremely surprised by her energy level and appearance for having no ANC. She actually tried skipping rope this afternoon while I was working out. Luckily we got through without any falls. And yes might not have been the best plan with her platelets being 34. But she wants to move, I don’t want to deny that.

I asked when we were planning to see the urologist and nephrologist. And that’s when I found out Jesse’s ANC had been miscounted yesterday. She is still at 0. Her white blood count came back as .2 again. Until Jesse’s ANC comes up, we are just hanging out and praying she doesn’t have another fever. I hate miscounts.

Since her platelet count hadn’t return, we opted to wait. Luckily 15 minutes later, it came back as 34. I have a feeling tomorrow she will be needing a transfusion. Her red blood came back as 10. She was 9 yesterday. As for her weight, she is 14.4kg.

While we were waiting, a very loud obnoxious nurse came in to draw Jesse’s labs with a nursing student in tow. I am not sure if she felt the need to show of in front of this guy, but she started talking to me like I have never witnessed Jesse have labs drawn. I calmly told her this was the 5th round of this treatment we have been through. Heck I could take the labs at this point. And she told the nursing student that they clean the top of the clave for 8 seconds, sides for 8 seconds, and let dry for 8 seconds. Interesting, the line doctor the other day said 15 for the grooved area of the clave.

I was able to catch the clinician before she disappeared to the lunchroom. Tomorrow Jesse and I will have to go back for counts. Once she reaches 500, we can stop the cefepime. At 2000 ANC we can stop the GM-CSF shots. To start round 6, her platelets have to be at 75 and ANC 750 once she is off the shots. I think right now we are looking at possibly having to wait an additional 2 weeks before/ if we can do round 6. Rats

Tonight Jesse will have another dose of cefepime at 10pm. Then tomorrow we have to be over at 9am to get labs. Crossing fingers and toes for no fevers and for some ANC. I made the mistake of letting her see the pictures of the kids at the campground at home. She had a moment of really wanting to be with them. We called her dad and the prospect of facetiming with them is making her a little happier.

Thank you for the well wishes from Mt Pleasant Baptist Church Tuesday Morning Bible study, Mom, Ann, Uncle Jerry and Aunt Carolyn, Community Presbyterian Church, Mrs. Delo, an Mrs Betty.

Thank you also to the class of 97 Tidewater Academy. Thank you so much for helping us financially with trips for Mike and Chris to come see Jesse. We are very humbled by what you have done to help us 🙂

A nurse last night hooked me up with some extra blankets to make a pallet on the floor. I slept better save for the nurse waking me up. Chris commented that she slept the best she ever had on the couch last night.

The nurse did wake me at 6am to let me know Jesse would need blood because her red blood was at 7.9. ANC is still hanging at 0. Her white blood count hasn’t moved at all. When this starts to move up that will be a good sign. Her platelets were 99.

As I was stepping out to brush my teeth, the nurse practitioner was coming in. She told me that from Jesse’s ultrasound the doctors felt Jesse’s swelling was from her lymph nodes. She had to explain to me that the lymph nodes often hold junk (someone else told us that the lymph nodes gather white blood collect in the lymph nodes and are given instructions before being sent out). The nurse practitioner said that the infection could be causing the swelling.

As she was telling me this, Jesse began heading to the bathroom. The nurse practitioner took a quick look at her groin. Then she said she would be back (never saw her again). The girls played with one another and asked the nurse for some crafts.

While she went to look for them, the teacher stopped in. Jesse spent an hour working on her letters, numbers, and site words. Mike suggested that I run out to Kroger and get lunch for everyone. I took the opportunity to grab a shower. I needed it because the constant in and out of people in the hospital room is getting to me. Plus the girls view everyone coming in and out as a new person to shower them with attention so they talk incessantly. There are times I feel like I am in the school lunchroom.

I was gone about 2 hours. I figured someone would stop by while I was gone, but surprising no one did. Jesse devoured the nuggets I brought back for her.

The unit manager and another doctor came by after lunch to check Jesse’s line and pump line. Everything checked out as they wanted, unless they chose not to tell me. They did ask me if everyone has been cleaning for 15 seconds. So I asked them about it because their handbook says 7 seconds. I got something about CDC regulations and yada yada. I find this really interesting because when I asked the line nurse in December why only 7 seconds, I was given that’s all you need. I am so tired of getting conflicting answers from various people within the same organization. (No worries I ignored the 7 seconds in December and have been cleaning 15 seconds.) I also asked them why I have seen people downstairs cleaning where the clave meets the lumen first instead of the end of the clave. They didn’t think that was a big a deal as I do because it’s alcohol and the drying action will kill the germs.

As they were in the room, the attending arrived with the medical student. He asked if we’d heard about the ultrasound. I told him what we’d heard. And he added:

1. They are not sure if the swelling lymph nodes are caused by infection or tumor
2. They planned to have infectious disease follow up with a plan of how to treat Jesse long term
3. Her kidneys are showing stable bilateral hydronephrosis, meaning her kidneys are still swollen
4. The kidneys are flowing okay. Not great and it will be the urologists call about stents.
5. They have talked about taking her off meropenem to save that for a more serious infection. In it’s place they plan to use sephlapin
6. Jesse will also go back on the nitrofurnation

He then asked if the main oncologist had been by see us. Turns out when he left the room yesterday, he called the main oncologist directly. I really appreciate him doing that. He then asked what we’d been told. And I told him what we understood to be the plan. Plus the concern with Jesse’s electrolyte (or electric lights as she calls them) loss from her kidneys. He then took the time to talk with Jesse and joke with her a bit. Really like this attending. He makes us think of our home oncologist, who we miss dearly.

The infectious disease doctor was the next to stop by. At this point, they don’t know if it is infection in the lymph nodes or tumor. But if it is infection, then it might be mersa or strep. He recommended putting Jesse on the sephlapin and starting the nitrofurnation back for potentially several months to keep Jesse from having uti’s.

As for if Jesse will be on sephlapin as a prophylaxis, we will have to wait and see if we do round 6. He did tell us that the septra is only a prophylaxis for an airborne illness that if it gets in the lungs is bad news. For the swelling of her groin, he recommended waiting to see if that swelled again before giving her clydamicin. This is an antibiotic which will knock out the mersa or strep if that is what is causing the lymph nodes to swell.

Mike mentioned to the infectious doctor about Jesse getting to recover at home for round 6. But since we don’t know if we’ll do round 6, this is kind of up in the air. I’d love to do that, but I am concerned about this swelling Jesse keeps getting. If we go home, will we end up in CHKD with a fever? I really need to get her through a round without being in the hospital. On the other hand, Jesse had really improved with Chris and Mike here. She was even dancing today and moving a lot more. Having her sister around forces Jesse to move. Needless to say I am torn right now on what would be the best thing to do for Jesse. I feel that she needs to be home to have her sister helping to push her to move around.

We hung out till 5:45pm, when the nurse brought Jesse’s shot. I was getting ready for a webinar sound check. I gave Jesse the shot, she didn’t scream, and the nurse was surprised that we’d done it so quickly. Then I tried to listen to the webinar, but this is difficult with Chris and Jesse around and trapped together in one room. Both have to constantly be talking. That’s okay…keep talking… you will be talking on the phone one day, and I will follow you with the vacuum cleaner. If you go outside, the weed eater and blower. I am going to have the shiniest floors and trimmest yard.

Thank you Ruth for the books. Chris has been reading them to Jesse. Thank you Ronnie, Jennifer, Graham, and Blake for the Frozen book and t-shirt. Jesse is now at 13 times watching Frozen. She often rides the halls here singing various songs from the move. Her favorite is “Hang in there Joan.”

Tomorrow Mike and Chris head home. Jesse is already starting to stress about them leaving. I will miss them too. And there has been some rumor about Jesse leaving the hospital… her fluids have been cut back to 4. But I will believe it when I see it.