Day 25 at St Jude

Thank you everyone for the positive thoughts and prayers. 🙂

Since the car was dead and I realized I didn’t have flushes to do Jesse’s antibiotic, Jesse and I were on the shuttle by 7am. We didn’t really have to be at sedation in Chili’s Care Center until 7:45, but I needed to get that antibiotic started. It is given every 8 hours. By 7:22am, I had her started on it.

Jesse was exhausted of course and in pain from the bone marrow biopsies. We went back for the pre-op sedation appointment. Around 8:30, the surgery doctor arrived. He mentioned that in removing her tubes from her kidneys, they could hit the stents. If they hit the stents, then the surgery would be longer and more complicated.

I appreciate the warning, but on the other hand… I could do without the warning.

While I waited on Jesse, I went to D Clinic to get the flushes I needed and try to get the sterile clave (cap) change kits and dressing change kits. Our nurse was really nice, but told me that I will have to be checked off on being able to do those things. Yeah a meeting with the line nurses, but the refresher will be good.

They called at 9:45am to say she was in sedation and when she awoke I could come in. I moved to outside the Diagnostic Imaging Recovery door. About 10:15, I heard Jesse yell, and shortly after I was admitted.

Jesse was not complaining about the tube removal. Instead she was complaining that her front hip hurt right where the bone marrow was taken. This is the first time I have seen them done in the front. I understand they had to because of her nephrostomy tubes in the back.

When we left, I gave her an oxycodone. Jesse and I went to the “covered porch” to wait for her 12pm labs. A little before 12pm, Jesse was called back. She had been sleeping the entire time.

The triage nurse asked about her pain level. At the beginning of drawing the labs, Jesse was out of it. But at the end, she totally came around. She was even sitting up cross legged! The nurse told me that pain medication taken by mouth can take 45 minutes to an hour to make a person feel better. IV pain medicine works in 15 minutes. This makes sense since IV meds don’t have to travel through the GI tract to get to the blood.

Jesse actually said she wanted pizza for lunch. But when she took a bit she complained she could taste it in a refluxy way.

We headed to D Clinic to await our appointment with her oncologist and learn the fate of this first round of chemo.

He was in a great mood… and the news is promising. The spot in her shoulder and the ones in her hips aren’t showing up in the MIBG. (Mike remembers our home oncologist mentioning that she had lymph nodes in that area showing trouble. I missed that). He also said the original tumor was looking less bright. He had said 3 almost 4 weeks ago that was really bright on the MIBG.

The bone marrow biopsies are still being read. The initial reading looks clear. But it will be a few more days before we get the definitive reading. The first bone marrow biopsies here had clumps in the sample. They could tell me immediately it was in Jesse’s bone marrow.

Even though this is all good news, Jesse is not out of the woods yet. We are praying that the 6 rounds in total will be enough to keep her alive to grow up.

For Jesse the most pressing question was: “What is my ANC?” and “Please no shot!” She got her wish 🙂 With an ANC of 3700, Jesse gets a week break from the GM-CSF shots. They did want a urine sample, but agreed to let us bring it over tomorrow when we come. It was 2pm by then, and Jesse was done.

As we left clinic the plan was to return on Monday for labs to get ready for admission Tuesday night at 8pm. This second round will be 5 days of cyclophosmoride and topetecan with one day off followed by the 5ml infusion of Natural Killer cells from either Mike or I. I asked the nurse practitioner about what to expect. She said the infusion of Natural Killer cells is really a non-event. If Jesse’s counts bottom out or she does run a fever we will stay inpatient longer than 8 days.

We waited on the shuttle for 20 minutes before cramming on there to get back to RMH. When we got back, I called AAA to see about getting my car running again.

As I was taking Jesse’s second dose of antibiotic off, her oncologist called. Instead of waiting until Tuesday to start the chemo, Jesse will be admitted Saturday night after the Harlem Globe Troters game (about 10pm). She will start chemo on Sunday. He wants to do this this way because of coordinating blood tests on me or Mike for the Natural Killer cells and when they can do the aphresis. Friday looks to be the day right now.

As he was telling me this, the AAA guy was calling to ask where RMH is located. Somehow I was kind of able to help him get here. He was able to get my car started, but told me the terminal to the battery post needs to be replaced because it’s too loose. He rigged it for now. He offered to return on his time to wrap the post on the battery using a beer can.

I appreciate his offer, but I know Mike. He would rather find a garage here and have the terminal replaced. And I agree that would be a better long term solution.

He suggested that Jesse and I drive the car for 30 minutes. Jesse and I hopped on 40 East, then ended up on 240 heading to Jackson, Mississippi, then got off somewhere North of St Jude (don’t ask me how we did that one). Jesse wanted McDonald’s. We found one, and she ate all 4 nuggets.

We returned to RMH about 5:45pm. Jesse has been talking my head off tonight and eating a bunch. Hopefully this will make the nutritionist happy with the weight gain. Now she is trying to read to me, but with her eyes staying dilated… she can’t see.

Tomorrow Jesse has an eye appointment. Really excited to get the ball rolling for her glasses. She can’t decide if she wants purple frames or blue ones… we’ll see what they have. She is also excited to go to school here, but I am not sure when that will happen now. I know they’ll come see her inpatient. Tonight she is mentioning that her right leg hurts at the hip and in her leg at the same spot she complained about before. I really hope the infection isn’t trying to come back 🙁

Thank you Norge Elementary for Jesse’s ballons. She was really excited to pick them up and that they were taller than her 🙂 I told her to hang onto them and they could carry her to her room on the second floor. That one got me the glare 🙂 She has gained back some weight – on Wednesday she was 15.6 kilograms. Today she is 16 kilograms.