Day 80 – 81 at St Jude

Day 80

Yesterday went much smoother. Jesse had a school appointment, social worker appointment, and dental visit. She never left the isolation area of the hospital.

At 4:30pm, I gave her the shot of il-2 and GM-CSF. And at 9, her temperature reached 100.2. I did freak a tad, but took it an hour later. It was down to 99.5.

Day 81

I took Jesse’s temp at 8am – 100.4. Crap! Took it an hour later, 98.9. I think the il-2 shot is making her go up and down. Just praying that she is not trying to start something.

I let her clinic nurse know. But when she took Jesse’s temperature it was normal.

Jesse’s counts were good except for her red blood and potassium. The nurse practitioner and doctor opted to give her blood in preparation for a week off. They first needed to check with the research nurse about some of Jesse’s labs. The research nurse is fabulous! She moved one test up to 7:30pm tomorrow. She also called our home clinic at CHKD to see if they could draw a level and mail it back. The wonderful nurse at CHKD said no problem. Woohooo!!

The oncologist was funny. He said that we’d have to go to clinic at home twice in such “it’s going to be a bother voice.” Let’s see… go to CHKD twice… and see our nurse and oncologist that we love to pieces… hmmm so painful to have to do that (sarcasm). I can’t wait to see them! I have missed the staff at CHKD so much. They have treated us like gold, and I have never felt the level frustration there that I have here. I think the size matters too. I get the business side of things that more patients equals more money. But when you are understaffed to handle the in-follow of patients… that’s not good for anyone.

He also said that since Jesse’s counts had bottomed out she could stop the GM-CSF shot after 3 more doses. She has actually not been screaming or crying when I have given her the shots this time. And even today, when I gave her the shot, she didn’t scream. And she’s not had any Ativan today.

I honestly didn’t wait for the nurse practitioner to call the research nurse. She’s easily distracted so I took it on myself to get the ball rolling.

I checked with pharmacy about Jesse other 2 il-2 shots she’ll need at home. Since I wasn’t sure if we’d be home or at clinic on Tuesday, I called Mike’s grandparents to see if they could take the delivery. Thankfully they could. I found out later, we’ll actually be home on Tuesday. Excuse for Jesse to visit them.

The blood wasn’t ready until 2pm, but I was busy running around getting her medicines straight, paperwork we would need, talking with our clinic back home, and arranging the flight through their travel office.

When I called the travel office the lady asked if we’d been paid in full for driving out. Luckily I had opted to take half at the time. She then asked about things she could see on Jesse’s schedule. Until I got those removed she couldn’t book anything. I called clinic, and they could only see where I requested the 9am slot to be left alone.

Once they removed that I called the travel lady back. She started talking about something else. I told her that we’d been here for 81 days consecutively… Jesse needs to go home. I need to go home. And I pointed out we’d only be home for a week.

She started looking for flights, but everything was full. She asked if she could call me back. After an hour, I finally heard from her. I was getting worried we’d have to wait till Saturday. Jesse has been begging to go home for quite sometime. She even asked God this morning if she could go home. (I am asking Him to please let her not run a fever so she can go home and have a visit).

When she finally called back we had a flight leaving at 12pm from Memphis. She had managed to squeeze us onto the last two seats of a Delta flight. I am praying that Jesse isn’t running a fever tomorrow.

While waiting on the travel office, I had been after the nurse practitioner for a letter that will help us get through the airport with Jesse’s liquid medicines. Thankfully the pharmacist told me about the letter. This morning when we met with them and they released Jesse, there was no mention of this.

I also found out that we’ll have to have everything out of our room since we’ll be gone a week. I figured I should call security about my vehicle. I talked with a man who said that it was fine, and they would call me on March 16 about my car. So right now, everything is loaded in the car near the security guard house.

Jesse has labs at 7:30am and 9am. Then we’ll take a cab to the airport. We will have to return on March 16. The doctor gave me the choice of more time, but I opted to return and get Jesse started with Round 5. We have scans before she can start. I’d rather have this week, then get back, get the next two hard rounds done, and be home. I am also praying that these 2 new chemo drugs from round 3 and 4 punched her cancer hard enough to give Jesse a better chance at life.

Jesse did complain about her chest hurting tonight at her CVL location. I changed the tape, and this has improved the problem. She did have a temperature of 99.5 at 9:30pm. Praying hard that she stays well to get home and enjoy time in her natural surroundings (like the wild beast she is). I keep telling her I am going to kiss the driveway. She keeps telling me not to because I’ll get my lips dirty.