Her appointment time was at 2pm, but they told us to be there by 12:30pm. She had to be fasting, so I did everything I could do to keep her occupied before we left. I took her on a walk, we played and I gave her a bath before I put her down for a short nap. We woke her up at 11:15am to leave to the hospital. The only PET scan machine Primary Children's has is in Salt Lake City, and it just so happened that it was snowing that day. Luckily, we got there early because we had no idea where anything was. We randomly ran into Isla's pediatric oncologist in the hall. Little miracles. She showed us where imaging was and we were not anywhere even remotely close.
They got us in a room pretty fast, but they were a little behind with everything so Isla waited almost three hours for her PET scan. It was pretty frustrating and stressful because she was crying and begging for food. I felt terrible.
During that three hour wait time in the room, they drew her blood. They left the needle in her hand for the PET scan and taped her hand to a little board so she couldn't bend her wrist. She actually thought it was pretty cool and kept showing us her hand. I was worried she would try to rip it off, but she loved it.
We tried to keep her preoccupied with drawing, playing with toys and Ms. Rachel. The hunger would come in waves and I always got emotional when she begged me for food. The nurses were very kind, but I couldn't help but feel frustrated. I will never agree to another scan that is later in the day.
They finally took her back around 3:30pm. She already had the IV in her hand, so putting her under anesthesia was a lot easier than other scans before. We gave her a kiss before we left. Then we waited. The scan wasn't long at all. They brought us back to her around 4:15-4:30pm. She was so happy to see us. She immediately started waving and saying "Dada! Mama!" It was the cutest thing.
I was able to hold her in a rocking chair and feed her lots of food. She was so hungry. I brought chocolate covered cinnamon bears, her favorite! She probably had about 10 of them. I sat in the back of the truck with her and she just kept eating the chocolate covered cinnamon bears. It was snowing pretty hard outside, so it took us a hour and a half to get home.
Once we got home, we gave her dinner and put her down for bed. Our oncologist told us that they would call us the next day with results from the PET scan. I prayed and prayed that the results from the scan would be positive so that she could start chemo that week.
The following day, our oncologist called at about 5:15pm. She told us that her scan showed nothing new or concerning, so she would be starting chemotherapy the next day at 8am at Primary Children's. The PET scan did show that the LCH was in multiple lymph nodes. We were very happy to not receive more bad news but nervous for the future with chemo.
In the next blog post, I will write about Isla's first round with chemotherapy. Thank you for reading and being here for Isla's journey!
Love, Megan
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