Day 120 at St Jude

I let Jesse sleep till she woke up this morning. At 9am, she sat up. Funny, I had actually finished my workout and turned the channel to Disney while I grabbed a shower.

After I showered, Jesse asked for breakfast. She ate a bowl of cereal, then wanted yogurt with gluten free cereal. She ate half of that. While she ate, she laughed and picked on me. I wondered to myself if she was on the upswing with her counts.

At 12:45pm, the hotel maid stopped by. I asked her to come back since Jesse and I were going to the hospital at 1:15. We arrived at the isolation doors at 1:20pm. The isolation nurse was not there, so I had to call clinic to come fetch us. Another family was waiting for a taxi to come pick them up. After 20 minutes of waiting, the dad suggested I call clinic again. I told them that I was hesitant to do that. The clinician seems to be the type with an occasional axe to grind. I wasn’t sure if she was making us wait because we had torqued her off in some way.

We struck up a conversation with the family who has been here since February from Puerto Rico. Poor guys. I really hope they are able to go home soon and everything turns out as they hope and dream. As we were talking my phone rang, it was the clinic nurse asking where we were. See our appointment was for 1:30pm… and by this time it was 1:45pm.

She instantly came and got us, and was very apologetic we had to wait so long. Turns out there was a lack of communication about Jesse. She saw that Jesse’s bracelet had been printed. So she texted the clinician to take Jesse’s vitals. Meanwhile, the secretary whom I had called, texted the clinician that we were in the isolation holding to fetch us. And the clinician was at lunch.

When our appointment time passed with no sign of us, the clinic nurse thought we might have gone for the ultrasound first. She called there looking for Jesse. Then she called other places looking for us before finally just calling me.

The clinic nurse took us to clinic, where she drew Jesse’s labs. After this was done, I ran to grab Jesse’s mail, snack bag, drink, and something for me to eat. As I returned, the clinic nurse was putting a gown on Jesse because ultrasound was ready. I was surprised because the schedule said 2:30pm, and it was 2pm.

At ultrasound, the technicians scanned Jesse’s kidneys, bladder, and right groin. Jesse asked why. I told her to make sure that her renal function was looking okay. Within 10 minutes she was done, and we were on the way back to clinic to wait for the doctor.

Around 3pm, the clinic nurse handed me part of Jesse’s counts. Her red blood was 7.5. Didn’t see that coming, especially with how peppy she has acted today. Her ANC has only crawled to 700. Her white blood count was 1.3. Her platelets had not returned yet.

The nurse practitioner stopped in. I kept it short with her. Just want to know the facts. She said that she didn’t know anything except Jesse needed blood. Her platelets came back at 21, but the main oncologist wanted to wait for tomorrow to see if they came up on their own. I asked her about the sodium bicarbonate Jesse is taking. She said she was going to talk with the main oncologist.

A few minutes later the main oncologist stuck his head in the door. I was surprised to see him because today is not his clinic day. Turns out he will be gone Thursday and Monday of next week, which might be why he stuck his head in the door today.

He told me that her renal ultrasound showed stability in her kidneys, and actually some shrinkage on one. For her right groin, the lymph nodes have shrunk. Yeah! Hopefully we can keep them this way.

He did mention that since her ANC is taking some time to crawl up, we might not be able to start chemo next Tuesday as planned. Tomorrow’s labs will be the deciding factor. If she is not making a substantial jump, we will push it back. And I am not sure how far back we will have to push it because it will depend on when transplant has an opening. And it will depend on Jesse’s recovery.

The nurse practitioner said she thought Jesse’s numbers would climb. The main oncologist told her he didn’t think they would. And I have to agree with him after seeing her current trend. I commented this was the 13th round of chemo Jesse has had (12th actually), and her comment was that I know it all. Compared to her when it comes to Jesse, I have a better idea.

Around 3:30pm, as I was talking to Mom it dawned on me that I needed to move Jesse’s appointments for tomorrow up in time. They were very willing to move Jesse to 7:30am. If she needs platelets, we can get that done earlier in the day.

Afterwards the clinician came to take us out. But I reminder her Jesse had to go to the Medicine Room for blood. She took us over, and we waited for 45 minutes before I reached the end of my waiting point. I walked out and asked what the rumor was. I wish the nurses would at least walk in when we arrive and say, “Hi, I’m so and so and I’ll be your nurse for today.”

The nurse came in with Benedryal and Tylenol at 4:45pm. Jesse took the Tylenol and her nitrofurnation. The nurse started the Benedryal. It was supposed to run over 20 minutes, but at 10 minutes Fred the IV pump beeped he was done. This was a little concerning to me and the nurse. She had just ordered the blood. So I took the chance to run for food and Jesse’s GM-CSF before we started blood. I am not sure she got all the Benedryal… and I want to be here if something goes wrong.

I ran into another neuroblastoma family in the hallway. They said their daughter recovered to 2000 ANC with the shot, then plummeted to 300. This is the first time (and hopefully the only time) this child has had neuroblastoma. The doctor told them that by the time kids reach round 5 of treatment, their bone marrow has really taken a beating. This combined with the length it has taken Jesse to recover is going to make me push for recovery of round 6 at home. Jesse needs her dad and sister, and so do I. Plus I need to get her access to food she will eat. She vehemently refuses to eat most of the food here.

I returned just in time because the blood just arrived. I am really sure that Oscar the Grouch has been doing his part again by donating blood. Jesse became really cross 15 minutes into the infusion. We are now near the end, and she is starting to drop some of the attitude. Yeah now she is talking on a banana.

Thank you James City County 911 Dispatchers for the box of goodies. Jesse has really enjoyed playing with them while we were waiting for blood. Thank you Mom for the picture to color and stickers.

Thank you Joseph for the horse stickers. Jesse really likes them. Thank you Mt Pleasant Baptist Church Tuesday Morning Bible Study for the well wishes and magnet. Thank you NC family for the card and well wishes. Thank you Miriam for your note and well wishes. Thank you James and Pam for your card and well wishes. They all mean a lot to Jesse and myself.