Day 141 – 146

Day 141

We started the day at 7:30. I had requested that Jesse’s labs be checked on Tuesday in case she needed platelets or blood. We arrived at the isolation door at a little after 8. Another family was inside the holding area waiting. I called D clinic since we didn’t see the isolation nurse.

As we waited, 3 other families joined us. It was twenty minutes from when we arrived to when someone arrived to let us in. Mike luckily took Jesse outside to wait. With many people on droplet protection… it’s a little scary to wait in that area.

Jesse’s labs returned really well. ANC 2500, platelets 77, and red blood 11. With her numbers being this good, we were released to the Grizzlies House to wait for the phone call about Jesse’s natural killer cells.

Before we left, the research nurse stopped by to see what she could do to help us with leaving. She is helping us while our main research nurse is on vacation. I like her because she is trying as best she can to help us. I asked her if she could find out what time the infusion would happen. I seem to have the success of calling the transplant coordinator when she is not at St Jude…

I ran to pharmacy to pick up some medicines that Jesse would need while Mike took her to the room. While I was waiting, the coordinator called me. They were still planning to give Jesse the cells at 7pm. Mike and I had talked about if that happened I would get the rental car earlier.

At 2pm, it was time for Mike to head to the airport. Even though we kept telling Jesse she and I would be leaving after 9pm to head back to Virginia, she still cried. She was interrupted by the cab driver calling to say he was here to pick Jesse and I up to go get the rental car.

Once Jesse and I got the car, I took her to McDonald’s. I know that fast food isn’t considered healthy, but I am extremely surprised that St Jude doesn’t have something like that on the property. The cafeteria is okay, but when it really comes down to it… I see very few kids eating in there. It is mainly employees I see eating in there with parents sprinkled about. And I find it interesting there is not a food store closer. But the trouble is with the condition of the area, I don’t know if it would be safe to use.

Jesse and I returned to Grizzlies to wait for the call about her infusion. By 6pm, we’d heard nothing. I loaded Jesse up, finished cleaning the room out, and headed to the Medicine Room via Isolation.

Fortunately the nurse we had was the same one from a few rounds ago. I explained what we were trying to do. She told me that she called them at 5:15pm to let them know we weren’t there yet. Not sure if that means the cells were ready then? I wish that place would just call me.

By 6:36, the cells were infused. Jesse was getting really impatient. And from the way she started talking to me, I was pretty sure she was going to pop a fever. Amazingly she didn’t, and at 9pm we pulled out of St Jude’s heading east.

Day 142

By almost 1am, Jesse and I were on the other side of Nashville. She slept a good deal of the way. I drove and scratched my feet. I have gotten into some gluten food the last 10 days. It is hard for me to eat at St Jude or even CHKD. The cafeterias only really offer the salad bar as gluten free… and that isn’t really cost friendly. Yes St Jude does carry the gluten free bread. I haven’t asked here at CHKD yet.

Jesse and I arrived in Williamsburg about 11:30. After dropping off the rental car, we went home. I tried to sleep, but that proved difficult with Jesse. Mike had to work late, but Chris was very happy to see us when she got off the bus.

Day 143

Jesse had labs at CHKD this morning. Her weight was 15.1kg (at St Jude it was 14.6kg). She did need blood and platelets.

I was concerned that Jesse was going to be admitted. Her temperature kept getting close to the admission point of 38 degrees Celsius twice in one hour. She reached 37.9 degrees Celsius at one point.

I called Mike and asked him to bring Jesse’s medicines just in case. He also brought her some soup.

By 5:45pm, we were on our way back home. As we drove, Jesse talked about wanting to go home. But when I told her Chris was at her softball game, Jesse changed her mind. We made it to Chris’ game with 9 minutes left.

About 9pm, I checked Jesse temperature. She was 100.3 degrees Fahrenheit. But after reaching that point she seemed to come back down.

Day 144

Today was a quick trip to Norfolk. Her platelets are 63 and red blood is 10.2. Her weight was 15.6kg. At this point last round, she was dropping weight. Praying that holds her till Monday. And a tad scared it won’t.

After tape change and labs were done, Jesse and I headed home. I do wish that CHKD would improve their internet access. It is very frustrating to attempt to work on. I need to figure out who is the right person to write a letter to. And if they are worried about a parent suing them because their kid watched content they should not have (which is stupid in my opinion), then have people sign a waiver.

Day 145

I let Jesse sleep in. But she woke me at 3am wanting water. Then she was up again at 6am. She then went back to sleep until 8am.

She has been a little cranky, but otherwise did help pick up things around the house. I went on a cleaning spree. It would be so nice to have one round of treatment out of the hospital.

In the evening, we went to Jimmy’s surprise birthday part. Jesse didn’t make it for Jimmy to arrive because she wanted chicken noodle soup and was exhausted. After running to the store for it, Jesse ate 1.5 cans. And by 8:30pm, she was asleep.

Day 146

Chris kept waking me up every few minutes with Mother’s Day poems. Can’t wait till she is a teenager and wants to sleep in. I know she was excited.

We ate breakfast. Jesse has been eating really well since we have been home. After breakfast, we ran to Home Depot to get plants for our garden. Jesse was able to hang with us for about 30 minutes, then she was done. I think that her mask plays a big part in that. It is miserable to have to wear it when it is hot outside.

Jesse and I returned to the house will Mike and Chris finished shopping. She has discovered Gilligan’s Island.