A PET (Positron Emission Tomography) scan is a type of nuclear imaging test that helps doctors visualize how well your tissues and organs are working. It uses a small amount of a radioactive substance (a tracer) that's injected into your body, which then travels through your bloodstream and collects in areas with high levels of chemical activity. This activity can indicate the presence of cancer or other diseases.
Isla's second PET scan was scheduled for May 14, 2024. Almost two months after starting chemotherapy. I felt sick the whole week leading up to it. I was dissociating a lot. I think it's because I have had a hard time dealing with the stress of everything. So much so that it's affecting me physically. This situation has definitely affected me differently than Jordan.
Even though I generally had a good feeling about the PET scan, it was still stressful. The PET scan was going to show if the Cytarabine was working or not. If it was, great. We keep going on with treatment. If it wasn't working, she would need to switch to the more aggressive chemo and have a port put in. Before her PET scan, I looked at her little body and wondered if they even made ports that small.
Other side effects of the more aggressive chemo are irritability, hair loss, constant hunger, weight gain, etc. While I was seeing good things from Cytarabine, I didn't want to get my hopes up just in case. So I tried not to think about it by dissociating. Not the most healthy way, I wouldn't recommend it.
Luckily, her appointment was two hours earlier than the previous PET scan. She couldn't eat or drink after 6am, but it was early enough that she wasn't bothered. I even woke up at 5:30am to feed her 9oz of whole milk. She drank it so fast. That put my mind at ease for her appointment.
We had to be at Primary Children's at 10:30am. We dropped the boys off at our friends house and we were on our way. Isla is so much more social. She walked around the imaging waiting room just waving at people. The receptionist thought she was the cutest thing. She even gave Isla this adorable stuffed octopus. Isla pushed the octopus around in her stroller.
They called us back and started getting things going. The oncologist had called me the day before and told me that they were going to get her blood work at the PET scan for her chemo appointment on Monday, May 19. The nurse came in with a heated blanket her Isla and she LOVED it. It was the sweetest thing.
The nurse let me know that they were going to get ready to draw her blood. She asked if there was anything that would help Isla with the blood draw. I told her that Isla was pretty good with blood draws and maybe if they had the freezy spray, that would help. She didn't cry the last time they used that.
They came in and were going to try her right hand. The child life specialist also came in to try and distract her. I had never heard of a child life specialist before Isla's journey with LCH. Here is what google says about Child Life Specialist: A child life specialist is a healthcare professional who works with children and families to help them cope with the challenges of illness, injury, disability, or hospitalization. They provide emotional support, education, preparation for medical procedures, and play opportunities to help children and families navigate the healthcare experience.
If you love working with kids, it really does seem like a very fulfilling job. I've loved every Child Life Specialist that we've met.
Anyway, back to the blood draw. They were going to try her right hand. They did the freezy spray and the nurse put the needle in. I was right by her holding her other hand and rubbing her back. Isla didn't even flinch or cry. My tough girl. But then... The nurse blew her vein. I couldn't really see because I was on the other side of her, but Jordan could see. The nurse almost started crying. She kept apologizing. Then she went to get the IV team.
The IV team were able to put the IV in her left hand. She only made a grumpy face, no crying. The nurses told me she is better with needle pokes than teenage boys. After they took her bloodwork for the oncologist, they gave her the PET scan fluid. She had to wait 30 mins before she could get her scan. It went by pretty fast and before we knew it, the anesthesiologist was taking her back.
We waited about 45 minutes before they took us back to see her. She was so happy to see us. I'm always relieved when she's in a good mood after waking up from anesthesia.
The pediatric oncologist called me the next day. The Cytarabine is working! We don't have to switch to the more aggressive chemo. The bone lesions were not showing as much activity as the previous PET scan and signs of healing. It's completely out of two of her lymph nodes in her pelvic area. The disease is still in her other lymph nodes. We will continue with the treatment plan we are on for one week, every four weeks. The next PET scan won't be for another 4 months. Things are looking up!
Thank you for reading and being here for Isla's Journey.
Love, Megan
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