PET SCAN #3

“We must accept finite disappointment, but never lose infinite hope.” — Martin Luther King Jr.

I always dread the PET scan days. We had to check-in at Imaging (SLC Primary Children's) at 10:30am. Jordan was at home with our boys because they have school now. I was worried about doing this by myself, but luckily my dad was able to come with us. Isla has a very special relationship with all of her grandparents, so she was very happy even though she was having a rough time.

The hardest part of Isla's scan is her not being able to eat or drink anything. She was begging both of us for food. It's heartbreaking. We kept trying to come up with different ways to distract her. Walking around, finding books, coloring, showing her videos of her brothers, FaceTime people she wants to talk to, etc. It was rough before we even got in a room. I was so grateful that my dad was there to help.

Once we got in a room, it was 11am. I asked the nurse if they were on time with scans today, she said she would ask. Isla was supposed to go under and have her scan at 12pm. I wanted to make sure she was on time. To be ready to go at 12pm, she would need to get the sugar injected at 11:30am. She has to wait 30 mins after getting it before they can do the scan. They also needed to get the IV in before then and I was stressed about the time because she was constantly begging for food.

The nurse came back in at 11:15 and said that they were 15 mins behind, which was a huge bummer. Isla wouldn't be able to get the sugar injected until 11:45am and then we would have to wait another 30 minutes. She wouldn't go back for another hour. She was getting harder to distract and I felt horrible not being able to give her food.

They came in to give her the IV. I told them she was really good with needles but they wanted to swaddle her. She's not used to that, so she started freaking out. I told them that I could hold her and she would do better, but they said that she was already swaddled. They poked her left hand and couldn't get any blood to come out. The nurse felt horrible. They tried her right hand and got it in. They left it in and taped her hand to a board. 

They ended up being 30 minutes behind. I know that might not sound like a big deal, but I was frustrated. She was so hungry. This time they let me walk her to the trailer where they do the scan. She was miserable. They let me stay until they put her to sleep. It was sad to leave her there. My dad left after they took her back. I am so grateful he was there to help.

They called me at 1:10pm to let me know that she was waking up. They took me back to see her at 1:30pm. She was already sitting up and chatting with the nurse. It was so cute. I was just happy that she was happy and not miserable like how I left her. The hospital had some food ready for her including an uncrustable peanut butter and jelly sandwich. She has loved those lately, so I opened it and handed it to her. She immediately started eating it. She ate it so fast. 

I fed her anything she would eat. She was in a much better mood. Now it was time for her appointment with her pediatric oncologist. We went straight to Oncology on the 4th floor.

I checked her in and the lady at the front desk told me that our doctor was still waiting on results from the PET scan, so we would need to come back in 30 minutes. I had no idea what to do for 30 minutes. I decided we would go on a walk. I pushed Isla in her stroller and we walked to the car to drop some things off. Then we walked up and down halls of the hospital. We called Jordan and Isla was so happy to talk to him. Finally, we were able to go back to Oncology. 

We waited in the waiting room about 15 mins before we got in a room. For some reason, sitting in the waiting room I realized how exhausted I was. I kept closing my eyes. I felt like I could sleep for days. I don't really sleep well before Isla's scan days. 

Isla wanted to play with all of their toys... Usually she can pick just one, but she was upset that we couldn't take all of them to our room. She started to have intense temper tantrums. I figured it was because of the anesthesia from earlier. She decided to have her biggest temper tantrum when her doctor came in. We were trying to talk over Isla's screams. 

Her doctor told me that it was completely out of her lymph nodes, but there were new spots on her bones. A new spot on her skull, her spine and her hip/pelvis. Cytarabine was not working on her bones. The doctor told me that there was a spot on her skull that was twice as big as before. They are worried about LCH getting to her brain. If it gets to her brain, the damage is permanent. She could have seizures for the rest of her life, or she could have issues walking/speaking. 

The doctor told me that we need to switch treatments and we will need to do the new treatment for one year. They also told me that they were having a meeting with doctors that evening and going over Isla's results. They said they also want to make sure the new spots are LCH and not a different type of cancer.

I was not expecting bad news. While she was talking to me, it almost felt like I was out of my body. So devastating. Not only that the chemo isn't working, but they are worried for her brain and we have to do treatment even longer when we thought we would be done in six months. 

By this point, Isla had calmed down and was just listening to our conversation. I felt like crying, but I held it together. We have a meeting with her doctor Monday (September 8) to go over treatment options.

Please keep Isla in your prayers. Pray that it won't spread to her brain. Pray that the chemo will get rid of it. Not the update I was expecting to give. I will give an update after we decide which chemo treatment we decide to do. 

Love, Megan