Day 147
I woke Jesse up at 6:45am to make the trip to clinic. Because of traffic it took me about an hour and 30 minutes to get here. I’ll take it though because tonight I will be sleeping in my own house (even with the dog that pulled all the flowers out of my pot that I planted yesterday and put them on the porch.)
I am surprised that Jesse made it through the weekend. You could tell she wasn’t feeling 100% by Sunday night.
One of the doctors was walking to his office as we were headed down the back hall for isolation. He was very kind to let us in. And because her main home oncologist is working on the floor this week, he came to see Jesse. As the nurse was drawing labs, I filled him in on what Jesse has been doing, where the tumor is, effects on her kidneys. I did tell him about the one episode of diarrhea yesterday. (Luckily Jesse is back to normal today.)
He’s another great doctor. Listen, communicates, and told us back in the beginning that he and our home doctor argued over who would take care of Jesse.
About an hour later the nurse returned with Jesse’s counts: platelets – 3 (yes 3, just 3, only 3), red blood – 8 (I am totally surprised that held at 8. I really thought she was much lower.), and ANC – 0. I wasn’t expecting her ANC to start climbing… due to last time, I predict we probably have 10 to even 15 more days in the 0 range.
For her weight, Jesse has maintained at 15.6kg. I am a little bummed on that one because she ate a lot. In fact, she tore up the okra I fried last night. And ate 5 biscuits for breakfast yesterday morning.
While we were waiting the hour it takes for the blood to be ready in the blood bank, Jesse and I went down to the butterfly garden. Flashes of Hope were here today to take patients pictures. They asked Jesse if she’d like some makeup. I didn’t deny her. The lady put on some blush and lip gloss on Jesse. She absolutely loved it. No worries, the makeup artist is very careful to make sure she stays clean as possible.
The photographer took pictures of Jesse getting her makeup put on. And he took pictures with her looking in the mirror. Then he took some pictures with her by a bench and tree. After that Jesse was done. But she did trick me into taking a picture with her. I am surprised that she felt good enough to want to have her picture taken. And I did leave the decision totally up to her.
As the nurses were getting Jesse ready for platelets, a woman appeared in the window. She didn’t tap on the glass, but just stared at what was going on. I asked the nurse who she was, and the nurse thought I knew who she was. She had a green badge. Not sure if the nurse said something to her when she left the room.
About 11:30, they gave Jesse her pre-meds for blood. Platelets finished transfusing at 1:30. Tomorrow, we might need more because she dipped so low.
As we started transfusing red blood, the nurse commented on how hard she fights going to sleep. But by 2pm, Jesse couldn’t fight taking a nap anymore. She slept till almost 4pm before waking up. As she was sleeping our main home oncologist stopped by. He joked that he is upstairs this week if she wants to run a fever. I told him thanks, but no thanks. I have used the wipes that kill 99.99% of C. diff all over the house. He laughed as he walked away because we both know that no matter what I do… she will eventually get a fever and have to be admitted.
I had called St Jude about 4:30pm to make sure Jesse got her GM-CSF shot refills by Thursday. I was passed through 4 people before the 5th could answer my question. But I will give her credit. I didn’t have to tell her Jesse’s medical record number. She knew who I was.
At 5:10pm, I gave Jesse her shot. She screamed only a little. Then we changed her clave, and Jesse and I hit the road. She did want to go to some of Emiliegh’s game, but she didn’t last long. I think the mask is hot for her, but with all that dust flying around… she is wearing it.
Day 148
Today we returned to clinic for labs for the GD2NK protocol. When we arrived, the social worker was passing by. She stopped in to talk to us. She mentioned Jesse’s 3 platelets. I guess we were the talk of the clinic for only having 3 platelets yesterday.
I was starving, so I sat down in the chair by the window to eat breakfast. Jesse was sitting in the chair in the corner under a framed group of about 12 or 16 tiles clinic kids painted. She was eating pancakes.
When she left, Jesse asked me to move my chair over next to her as I have been doing other times. I slid her chair away from the wall. Then slid my chair in. As I was finishing, the clinician came in to get Jesse’s weight and vitals. Up to 15.8kg (woo-hooo!!).
I pulled my computer out and sat down. While I waited for it to start, I looked at the tiles in the frame. I actually had the thought of wandering where those kids who created the tiles are today.
I closed a program on my computer that likes to open when I start the computer, clicked on the wi-fi button to connect, and start working. Before I can even finish the click, there was a crashing sound and Jesse was screaming. I looked immediately at her. I saw the glass in her chair, and the picture on the floor. It dawned on me then that the picture was down. I honestly didn’t even feel it really hit my head… I guess because my first thought was Jesse. Plus I already had a sinus headache from forgetting to take my allergy medicine yesterday.
The glass from the frame was everywhere. All over my computer, which must have kept the picture from going more to Jesse, all over me, and all over the floor. As all of this is starting to dawn on me, the door was flinging open and everyone is rushing in. Poor Jesse was petrified, but lucky not cut. So thankful she was not cut or hurt physically in anyway.
A nurse moved Jesse from the chair to the bed. I think they checked her over. I was concentrating on not moving because of being covered in glass and staying clam. I figured if I freaked out, Jesse would freak out to. Plus I was trying to think of the best way to clean all the glass up without getting injured. Everyone was really nice asking if I was ok. And I am. I have a small scratch to my neck, a cut on my hand, and one on my thumb. None of them require stitches.
I am not good with emergency situations or being the center of attention. I joked that I have paid to be hurt worse by doing Rugged Maniac and GoRuck Challenge. To help Jesse, I joked that my mama always said I have a hard head. This made her laugh.
They got us moved to another room. I changed my shirt because of the glass that was all over it. Later on, I noticed I still had shards of glass in my head. No cuts, just glass.
People came by to check on us. I really appreciate their concern. I joked with them that I have a talent for getting injured in hospitals. The Child Life gentleman for the clinic made sure our drinks were replaced because we weren’t sure if they had glass in them. I feel really bad for him. He was so upset that the picture fell and hit me.
IT took my computer to their office to blow and vacuum to shards of glass out. The director of the clinic asked if I need to go the ER. I don’t, and told her so (nicely 🙂 ). She told me that she would have to put in her report I refused treatment. My thought is great now I have an incident report at St Jude and CHKD. :/
The clinic also called maintenance to come remove all the pictures with glass in them. I am really lucky that I wasn’t hurt worse. I am also glad that I was the one the picture hit. I will heal. If it had hit Jesse or another kid, that would have been horrible.
After awhile Jesse’s counts were back. Her platelets are 36. The doctor suggested waiting until tomorrow to transfuse Jesse with platelets. Her blood is great. And he feels she should stay on potassium for now. To help me out, the doctor went ahead and ordered the platelets for tomorrow. Jesse will have labs checked, get the transfusion, and we’ll be on our way. I really appreciate them doing it this way.
Jesse and I headed out the door at 11:30am. She has eaten two servings of spaghetti for lunch.