Day 121 – 127

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.