Day 39 at St Jude

Jesse felt warm to me when we woke up this morning. I took her temperature: 100 degrees Fahrenheit. I gave Jesse her morning meds, and we headed to over to triage for her blood draw. Thankfully her weight had stayed at 15.2kg (33.5 lbs).

At triage, her temperature was still 100. Jesse was talking about being hungry, so we went to the cafe. Jesse didn’t see anything she wanted. Luckily the vending machine did have something she wanted to eat.

We then met with a PK nurse. St Jude has been conducting a study for 15 years looking at how genes and medicines interact. They have asked Jesse to be part of that study. Plus St Jude has started another study to tell parents which drugs they are finding that work with which genes the kids have.

Then we waited for our clinic appointment. Jesse complained that she was tired, but didn’t fall asleep.

In clinic, the nurse took Jesse’s temperature: 101.3. Line culturing, antibiotic, and waiting for a room to be ready were the next steps. Finally around 11, we could go upstairs. She has no cough, no runny nose, so we have to wait for the cultures to come back. This will take 24 hours for a “fast” reading. And 72 hours for the official reading.

Once Jesse was settled, I ran back to RMH for her GM-CSF shot vials, needles, clothes, and requested toys. I was gone for 30 minutes, and luckily nothing happened during that time.

Since it was a little after 12:30pm, Jesse asked for soup. She ate only a bite of the honey bun from teh vending machine. But by 2:30pm, she was singing the stomach ache blues. The nurse had already pre-meded her with Benedryl for platelets. Luckily at 3pm, she could have zofran.

A volunteer stopped by asking if we need anything and suggesting that she come down to the playroom. I am not sure if it is me… but some of these volunteers make me really uncomfortable. Not sure if it’s because I think they are judging me for not being overly responsive to them…

At 4pm, I got the vial for Jesse’s GM-CSF shot. The nurse told me the IL-2 shot had not arrived yet even though she’d been asking pharmacy for it since we arrived on the floor. I knew they had the shot ready for Jesse this morning because I stopped by pharmacy to check. I had also told them to hold it because the ethanol/placebo wasn’t ready.

It actually made me really hot under the collar that pharmacy didn’t send the IL-2 up when requested. I hate giving Jesse shots, but I try to do them at the same time to minimize the trauma. I went ahead and gave Jesse the GM-CSF shot.

At the time I was drawing up the GM-CSF shot, the nutritionist stopped by. She wanted to talk about the kilogram that Jesse lost and what would she eat. Hmm… you gave her chemo, dropped her ANC to 0, and want her to gain weight. She wanted to order Jesse a whole case of chicken noodle soup. I told her not to. Past experience with Jesse has shown that if you do that, she’ll decide she doesn’t like it anymore. I find the nutritionist infuriating. I feel like she is riding my back to force Jesse to eat. I know that she just wants to help because Jesse should be eating to help with her health. But how can you force someone to eat when you load their system with chemo.

I got a feeling that before this over… I am going to loose the battle to keep her off TPN.

I promised her once I gave her the shot, I would check the mail. As I was walking out, the nurse let me know she had called pharmacy. They acted totally surprised that the IL-2 hadn’t been sent up yet.

I came back and gave Jesse the shot so that it’d be done. Then I went to the mail room.

Opening the cards and packages brightened Jesse’s day. But after a few her stomach was hurting again.

Later she wanted to talk with Mike and Chris. Then asked me for something to drink. I noticed they have her fluids at 55. With chemo it has normally been 46. The nurse explained that this is maintenance rate for Jesse.

I ran down to get Jesse a drink she’d asked for. When I returned a volunteer was in the room with her. Ack. I keep telling myself they want to help… but just not sure what the deal is. I had gotten myself food too, but I didn’t feel right trying to eat with a stranger in the room.

Finally Jesse’s pump started beeping, and thankfully she left. I know they are trying to help, but after 5pm, the only people I want to see are the nurses. The volunteers sometimes just add another level of people in and out.

Jesse told me she was tired and handed me her glasses. Her dad texted at the same time asking if she wanted to Face Time. Jesse really enjoyed seeing Sharon, James, Gary, Melonie, her dad, and sister. And she has been talking to me about school, winning her sister a prize, and telling me she is going to explode (throw up).

We met our new nurse tonight. And he said some words that I think I was starting to forget. We need to keep our eyes on the end of treatment and Jesse being well. It’s so easy to get bogged down in the minute of everyday and the complete suckiness of not being home (he didn’t say suckiness). But we should fight to remember how blessed we are that Jesse was accepted into the study.

Funny thing was I wasn’t complaining. I think this might be give the speech he gives all families that meet him for the first time. And it was good to hear those words to remember, even though I was trying to explain that we’ve been in these shoes many times. I need to give up try to explain that because the professionals here don’t want to listen to me. I wish they would put a brief history in her notes for the nurses.

Jesse is unfortunately running a fever of 103 tonight. I asked about the fluids running at the higher rate. He explained the doctors might have requested that to flush out the tumor cells that were killed by chemo. She is also complaining her legs are hurting on top of her stomach hurting. She is refusing to take the oxycodone. But did let Fred take Benedryl for her.

Thank you Ginnie, Michael, Hannah, and Aaron for the wreath, stand, DVDs, pretzels, tissues, crayons, hat, food, and stickers. Jesse loves the wreath.

Thank you Mrs. Brown for the flowers, blanket, coloring books, picture, and food. Jesse commented that the flowers are great because they won’t die. And she loved the glittery picture.

Thank you Deb for the blanket. Jesse commented it is beautiful and soft. 🙂

Thank you Mrs Touhy for the princess headband and coloring book. Jesse is really excited to wear it when she comes home.

Thank you Aunt Dale for the card and gift card. Thank you Jimmy and Nancy for the card. Jesse loved the tabby. Thank you Peeler’s Fish Group for the well wishes and card. Thank you Mrs. Ro for the card and stamp picture. Thank you Chris, James, Jim, and Donna for the card and well wishes.

Thank you Mt Pleasant Baptist Church Tuesday Morning Bible Study for the well wishes and card. Thank you Mt Pleasant for the support too. We greatly appreciate it.

Thank you Mrs. Van Gelder for the stickers. Thank you Uncle Greg and Aunt Beverly for the card, support, and stickers. Jesse was really excited by the stickers 🙂

Thank you Pete and Mindy for the card. Jesse said the dog made her think of Maggie 🙂

Thank you UMW of Knob Creek for your card. Thank you Autumn for your hand drawn card. Jesse enjoyed your drawings 🙂

Thank you Jeanette and Beth for your cards and well wishes. Thank you Ruth and Jackie for your cards and support.

Thank you everyone for your support, prayers, and help. All are greatly appreciated.