Day 56 at St Jude

Last night Jesse and I returned to St Jude at 11:15pm for her blood draw as part of the protocol. Jesse was so excited to have the gentleman with all the bracelets as her nurse. She has been slightly bipolar and pale looking yesterday and today. And I joked with him that I would be highly surprised if she didn’t need red blood on Sunday. I heard him laughing about Oscar the grouch blood or java infused blood as we left the Medicine Room.

At 8:10am, Jesse and I headed back to St Jude for a blood draw and weekend clinic. Jesse was really upset about the blood draw, and her blood pressure read 126/89. I asked her if she thought we were going to stick her. She said yes. Then I asked her if I had told her anything about sticks. She said no. I then asked her if didn’t I always tell her when she would get a stick? And she said yes.

I asked the triage nurse to get her blood from her tubbies (CVL) and then try the blood pressure again. This time she was 110/76. We got her temperature and weight (15.6kbg – approximately 34.32lbs).

Then Jesse and I went back to the waiting room to wait for them to call her for clinic. About 9:30am, they called her back. I was totally shocked. Her red blood is holding at 8.2! Plus her ANC is at 4300! It has to crash sometime next week.

The nurse made the comment that we could leave, but I told Jesse we needed to stay until 11:26 for the protocol 20 hour lab draw. This didn’t go over well… and what didn’t go over well with me was them offering her toys and chocolate to make it better. I told Jesse we could either return to RMH and wait the 2 hours or sit in the waiting room to wait. Jesse choose the waiting room.

At 11:27, no one had called us back. I took Jesse into the Medicine Room to see if we could get the draw done. A nurse told us to sit in the 3rd chair in a row of chairs. As I was sitting there, I heard a nurse talking about Jesse and her blood draw. She looked right at me… and disappeared.

Twenty minutes later a clinic nurse was walking by. She saw us, and asked if we were being helped. I told her I wasn’t sure. The nurse with all the bracelets was helping another family right next to us. She asked him to get the lab so we could go. Then she asked us for the medical record number.

She went over to the desk to talk with them. The same nurse who disappeared at 11:30, reappeared claiming we weren’t over there when she’d looked. She looked right at us the first time. And in 20 minutes, we hadn’t moved. Don’t blame me for your screw up.

She came over and did apologize. She got the lab, changed the IV bag, and Jesse and I were out of there. We got back over to RMH around 12:30pm.

I left Jesse in the room while I went to get her some cheese and food for me. A group was serving lunch, so I got in line to grab a plate. A man behind the counter started grilling me if I had a kid at St Jude. Do I look like I’ve broken into these places? Between him and that guard at St Jude, I am starting to wonder how bad I look. And also why all these people think I would want to break any to any of these places. I’d much rather be at home. But I guess the silver lining is since I look like a burglar, I won’t have to spend money on Halloween costumes.

Jesse’s stomach has been hurting her more today. And I am not surprised as she finished chemo yesterday. Tomorrow she has school, labs at 11am CST, and to see the oncologist at 1pm. Tomorrow we’ll also start the IL-2 shots. Jesse has been worrying about that on and off all day.

During the 20 minutes, we “weren’t there” in the Medicine Room, Jesse met a little girl who had just had her CVL placed yesterday. She is 2.5 years old and just started the diagnosis process. She was a little scared of having her CVL flushed. I told them we used to sing songs when we’d flush Jesse’s tubes. And that we named all the machines and told Jesse she was helping them. I hope that makes things easier for this little girl.

About 4:30pm, Jesse’s stomach felt better. But by 6pm she was saying it hurt again. The main thing for me at this time is keeping the medicine down.

Thank you Randy and Sandy for your note and book. Jesse loves the book. Thank you Sherry for your card and stickers. Thank you Lynne Marie, Richard, Ethan, and Ashely for the coloring book and Doc McStuffins book.

Thank you Cindy, Mike, and Biscuits; Mt Pleasant Baptist Church Tuesday Morning Bible Study; Caca’s Sunday School Class; Mrs Ro; Dr Coffield; Aunt Carolyn and Uncle Jerry; Debra; Louise Marie; Grandma; and Knob Creek Methodist Church for your cards and well wishes.

Thank you Terri and Jim for your jungle card. We have it sitting next to the lady bug card in Jesse’s window at RMH.