They started the antibody at 8:30pm last night. Turns out that Jesse only made 3 hours through antibody this afternoon. So the infusion will take 5 hours.
I am not upset about it… like we are going anywhere else. The premedication of benedryl and morphine seem to have knocked her out for a bit. I am planning to stay up to keep an eye on her.
December 24, 2013
I didn’t make it. I woke up at 3am after the infusion had finished. Luckily Jesse had no reactions or coughing. Around 4am Jesse woke me up to help her get on the toilet. She was successful in going #1. We both climbed back into our beds and zonked until about 8am.
Jesse felt the urge to go #1 again. She was successful again. At 9:30am we began the last day of chemo for this round. 10:30am CST we started the last antibody. Since the doctors have decided to medicate her with Zantac (it’s an antihistamine for your GI track too) and if she coughed to power through, they increased her rate back to 10ml for 4 hours versus 5ml to 8hours.
I did a little experiment of my own. I did not let Jesse have any chocolate milk or ice cream last night or today. (It wasn’t hard… she is not interested in eating.) The last two days that she coughed I had allowed her to have milk and ice cream. I wonder if the antibody causes old allergies to resurface in a way. Jesse had a milk allergy as a baby.
Jesse did make it through the antibody with no coughing or other reactions. And by 3pm, we are done with Round 1 of the GD2NK.
The doctors came in to talk with me about the antibody. They also felt that Jesse needed to have an ultrasound of her leg. The swelling could be from a clot. Doing the ultrasound would allow them to rule that out as the cause of swelling and pain. And today she has seemed to be in more pain.
The discharge nurse returned. We completed the refresher on giving shots. She did give me a nice compliment about cloning me (ah if only she knew that might not be the best idea 😉 But I appreciate that she views me as capable.). I also talked with her about the concern of Jesse’s swollen leg and labia. She has made up an appointment to meet with rehab on getting Jesse a wheelchair.
I am fine with the wheelchair. I was getting really scared of taking her out of here without it or a wagon. She can barely walk right now.
During the antibody, Jesse felt the urge to pee again. While she was up, we changed her bed sheets. We washed her hair and gave her a sponge bath of sorts.
We planned to weigh her when she finished. But 90 minutes later, she was still trying to pee. When the ultrasound lady arrived, I was able to get Jesse to agree to get in the bed for the ultrasound as long as she could get back on the toilet when done.
Since the technician needed to press down on Jesse’s right leg to get a good picture, she caused her a lot of pain. Jesse cried and screamed, but amazingly never moved. We told her at the end she did a great job and that she was a big girl. Sobbing, Jesse told us: “I’m not a big girl. I was crying and screaming!”
Afterwards Jesse was back on the toilet trying again. In total she tried for 3.5 hours to pee today… and sadly no luck. The urge is there, but I am sure if the low hemoglobin plus medicine haven’t affected her bladder today. She has got Benedryl, Tylenol, Septra, Rocefrin, Advantix (sp? it’s like Benedryl), Ativan, Zantac, Morphine, Neuronton, Chemo, and Antibody. And I have probably forgotten something.
With the holiday, it took a little time for the ultrasound to be read. Luckily, Jesse has no clots. With the location of the tumor and the potential to be squeezing a blood vessel in her leg, Jesse is in danger of having a clot. And a clot is a big deal because it could travel to her lungs. I am praying that she does not get a clot at all. And I pray these drugs are slowing the tumor down. It would be awesome if it melted it.
Around 4pm CT, the nurse hung Jesse’s red blood transfusion. And right now she is snoring as she gets the blood. It’s either going to be straight Java blood or Oscar the Grouch has been donating again (thanks Oscar, but they need to figure out a way to filter out the grouchy cells). Her HGB (hemoglobin) was 7.4 today. On December 20, 2013 her ANC (neutrophils) was 12,900. Today it’s 3800.
Tomorrow Santa will stop by around 8 to 8:30am. The only medicine we have planned is the IL-2 shot and rotating nausea drugs. Jesse did eat 1/3 of a pancake.
I did check the mail this morning… then forgot this afternoon. I’d like to thank the students from Rebekah McClung’s class at New Kent School and Shaia, Sophie, and Cyrus. Jesse enjoyed looking at them. And y’all made some great cards with fantastic messages. 🙂
Wishing everyone a Merry Christmas Eve. May your holiday dreams and wishes come true.