Day 34 & 35 at St Jude

Yesterday was crazy with Jesse getting sprung. Medicines to get, stuff to pack, waiting on discharge papers.

The transfusion went very well. I was trying to stay awake, but at almost 12am I woke up with the nurse trying to figure out why the lead wasn’t working like she wanted. A few minutes later 4 more people were in the room: transplant nurse, transplant nurse in training, nurse on the floor, and the lab person who had the NK cells on ice.

The bone marrow nurse was grousing about the time of the transplant. The lab person explained that some doctor whom they didn’t name didn’t want 6 people to have to work on Saturday. I think the lab person was wise enough to realize how horrible that probably sounded to us because she said it a little tersely.

Jesse started screaming as they began to move her around to get to her CVL. I think awakening to 5 strange faces all peering at her in the dark was a bit much. I’d probably scream too, might even take a swing. I’ll give Jesse created that she didn’t.

The transplant nurse in training pushed the NK cells into Jesse’s red lumen. Took her 2 minutes total time. Then they were gone except for the nurse coming in every 30 minutes to check her temperature and blood pressure for 2 hours.

Thankfully Jesse did really well, and the fact she didn’t run a fever earned her release on Saturday.

At 9am on Saturday, the doctor came in. Jesse could leave. We just needed to get the IL-2 shot. Since this is a chemotherapy shot, it would take some time to make. She gave us the choice of waiting for the shot or leaving and returning for it later. Since Jesse has been having mood swings horrifically, we opted to come back.

The doctor also told us that Jesse’s ANC was 1400. This is confusing to me because she was 800 a few days ago. We go back Monday at 8:30am for labs… so we’ll see then if it has fallen.

The nurse came in and told us she’d get the discharge papers started once she finished a procedure. While we were waiting, pharmacy called to say they had the shots ready. I’ll give St Jude credit, they don’t waste time.

By 11am, we were out the door and at RMH. I left Mike and Jesse at RMH to run out to Walmart in West Memphis. I was not overly impressed driving over the Mississippi River. I had it in my head it was bigger. I will say that driving in to Arkansas was nice because there were less building and more farmland.

I returned with McDonald’s for Jesse. She was thrilled. Sadly a few hours later, it came back up. We were able to get her to eat more later. I worked on writing out Jesse’s medicine schedule so we didn’t miss anything.

In the evening she talked with Emileigh, Jimmy, Melinda, and, her sister, Chris. Landan was zonked out. ๐Ÿ™‚ Chris misses us all, and I miss her. So does Jesse. She is amazing too because she understands we are all apart because of the cancer.

Jesse did cry some yesterday about Mike leaving to go home, and this morning was really hard. She and he bawled when the shuttle arrived to take him to the airport. We had talked about us taking him, but the concern over Jesse’s nausea and riding for 30 minutes each way might be too much.

After Mike left, Jesse told me she hated that I brought her here. And asked why couldn’t we have stayed in Virginia. I can’t get her to understand that this was the best option we felt we have for her long term survival. And yes I did look at her and tell her she would die if we didn’t come here.

She had experienced some nausea this afternoon, but luckily the medicines have helped to keep down the food she has eaten so far. And she even held perfectly still for me to give her 2 shots this afternoon: IL-2 and GM-CSF. Tomorrow I will only have to give her the GM-CSF. I am sure the residents at RMH love 4pm around here when Jesse screams because of the shot.

Tomorrow we just have labs and visit with D clinic. I have a feeling that Jesse might need platelets. We’ll see ๐Ÿ™‚

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5 Comments

  1. Dear Soosan, you are doing so well. You are a wonderful and special mother and you are handling this adventure with true Grace and ability. It is amazing how you handle the blog, the ups and downs of Jesse’s treatments and all the rest that you do. You, Jesse,Mike and Chris are always in my prayers. I put Jesse’s name in the book of prayers at Church yesterday. Please let us know if we can do anything for you and please take a little time to take care of yourself. Hugs to you both.

    1. Hi Pat,

      Thank you ๐Ÿ™‚ I think I lost some grace today by telling the nurse and doctor I was frustrated. Thank you for the prayers. They are the best gifts ๐Ÿ™‚

  2. Dear Soosan, you are doing so well. You are a wonderful and special mother and you are handling this adventure with true Grace and ability. It is amazing how you handle the blog, the ups and downs of Jesse’s treatments and all the rest that you do. You, Jesse,Mike and Chris are always in my prayers. I put Jesse’s name in the book of prayers at Church yesterday. Please let us know if we can do anything for you and please take a little time to take care of yourself. Hugs to you both.

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