Day 61 at St Jude

Ok so I am basically trying to stay awake for Jesse’s 11pm dose of zofran. I know the doctors and nurses say the nausea is less with irintoecan and temolozide… but for Jesse it is ranking pretty close to cisplatin. Cyclo/topo rounds were not this severe.

Jesse woke me at 6am with diarrhea. She had another round of it about 8am. The irinotecan can cause this.

Jesse was really excited today is Valentine’s day. She woke up this morning talking about it. And she really started talking about it when I asked if she’d like to FaceTime with her class later on. She even went to her class here talking about face timing her friends back home.

Jesse wasn’t interested in breakfast. She was too excited to get to class. She kept asking if we could go over to St Jude and wait. At 9:30am, we headed over. The parking lot was crowded. Instead of fighting the crowds, Jesse and I went to the registration at Chili’s Care Cater.

Then we went to the main building of the hospital and down to the basement for her class. I could hear her tell her teacher about her class at home, her tooth, and Valentine’s day. The teacher had heart shaped candy she was using for a graphing exercise for the kids. Jesse did eat some. (And the teacher asked before hand).

After class, Jesse and I went to check the mail. She had many letters and several packages. The lady commented that Jesse must be very thought of. Jesse was really excited. Because of how busy St Jude’s was, we grabbed a wheelchair for the packages. I am sure that people had some interesting thoughts as we walked along.

Then we went to pharmacy to get Jesse’s IL-2. I asked the pharmacist about 2 vials of GM-CSF I had here that expired 2/18/2014. I wanted to know if I could use those instead of wasting them. But I also wanted to make sure it was safe. The pharmacist was so happy that I had those 2 shots. She talked about how it would save them cost, but she didn’t say how much cost.

I also made sure that they gave me subcutaneous needles for Jesse’s IL-2. Last time I went to give her the shot, I realized the needle was huge. There is someone in pharmacy I think who is either learning or just going through the motions.

She started talking with Jesse about her boots. She mentioned that she wanted a pair of light up ones. Light up shoes always make me think of one of the few times my home county in Virginia made the national news. It was back in the 90s when the light up shoes first came out. We were watching the evening news, and Tom Brokaw announced that in Charles City, Virginia a drug dealer was successfully caught because the police followed his light up shoes.

The mention of drug dealer struck Jesse’s ears. “Justin Beiber?,” she asked. We got to laughing and explained he probably wasn’t even alive when that happened. But Jesse was off and running about how disappointed she is in him for doing drugs, and doing drugs without a prescription could make you really sick. Needless to say she is very disappointed in him.

We returned to RMH right before the rain fell. It always seems to be cloudy and/or rainy in Memphis. Jesse wanted an English toast pizza. She ate 1/3 of it. Then she ate some kisses. She kept asking me if it was time to see her class.

At 1:15pm CT, it was time to face time her class. Jesse was so excited to see everyone and the big red heart. Thank you guys so much. She misses all of you horribly. And tonight when I had to give her her 2 shots in her leg, she told me she wanted to go home and be back at Norge in school.

After talking with her class, Christine, Emileigh, and Landan (thank you for including them), it was time to change Jesse’s tape and claves. I miss my table at home for this. Jesse did a great job holding still. The tape did bother her a little more this time. By 2:30pm, we had it changed and the ethanol in one line to sit for 2 hours.

At 5pm, it was time to do Jesse’s shots. Her anxiety began to climb around 4:45pm. And when I gave her the shots she screamed. I feel like the 5pm alarm. Jesse yelling at me that she’s too precious to get shots. Me having to give the shots.

Afterwards, Jesse had a pretty impressive round of diarrhea and vomiting. She threw up so hard that I will not be surprised if she complains of back pain tomorrow. Once she finished, she felt better asking me for yogurt and nuts, then popcorn. She even ate a bag of Doritos. Hope that stays down to give her some nourishment.

At 9:30pm, she was out. Tomorrow I am going to attempt for us to have a quiet recovery day. I am exhausted.

Thank you Pat and Dallas for the funny face glasses, books, lollipops, and fan. Jesse thought the glasses were great. She loves the pinwheel book. And with her new correct glasses, it’s easier for her to see things.

Thank you Allison, Dale, and Ken for the bald doll, clothes, candy, pen, stickers, and case. Jesse has already changed the dolls outfit several times.

Thank you Mrs. Wheeler’s class for the big red card. Jesse joked that it was her dress. She enjoyed reading the notes.

Thank you Coco, Kathy, and Malakai for the candy, book, shoes, clothes, and hand sanitizer. Jesse loves the shoes. She is talking about wearing them to the kitchen here tomorrow. It will depend on her stomach.

Thank you Ruth for the Minnie doll. Jesse was so excited with her dress. Your family is also in my prayers.

Thank you Erin, Chris, Wyatt, and Brynn for the cards, bracelet, book, Fred decorations, and sticker book. Jesse loved the handmade cards and decorations.

Thank you Brooke for the cabbage patch kid hats. Jesse keeps talking about the ability to put on hair now and take it off. I laughed when I saw them because my cousin and I had been talking about those hats last night.

Thank you Aunt Carolyn & Uncle Jerry for the stickers and activities. Jesse is really excited to try the one with the squares.

Thank you Nancy for the window clings. Jesse hung them on the mirror in our room.

Thank you Lousie Marie for the trips to McDonalds for Jesse.

Thank you Elise & JC for the Precious Moments book and valentine with lollipop. Jesse was so excited to get the Valentine.

Thank you Knob Creek church; Swaims; Uncle Greg & Aunt Beverly (thank you for keeping your head shaved. Jesse is impressed); Mike, Cindy and Biscuit; Susan; Morganton, NC cousins (Tracey, Shelia, Jessica, Emma, Kaydee, and Sis); and Betty for your cards, notes, and well wishes. Jesse was so excited to get your Valentines.

Thank you Dr Coffield for your card that Christine helped with. It was really good to see her handwriting. Thank you for meeting with her.