ROUND #5 OF CHEMO: CYTARABINE

Monday - July 14, 2025
I decided to have Isla's hospital appointment at the Primary Children's in Lehi after not having the greatest experience in Salt Lake last time. I don't want Isla to be traumatized by the hospital. She is already going through enough. I felt as if we kept going to Salt Lake, she was going to be afraid of going to the hospital. Salt Lake is great, but it was hard for her to get comfortable with the staff.

It came with a tiny bit of pushback from nurses telling me "But your doctor will be in Salt Lake that day." I told them that it was okay because I hadn't seen her doctor in a long time anyway. Isla's doctor updates us by phone and it has been working fine. 

Isla's doctor ended up calling me and asking if it was a scheduling mistake that we were going to Lehi. I told her about our experience at Salt Lake and how Isla always loved going to Lehi. I said that we still wanted her as our doctor, but we did want to go to Lehi for her appointments. She was completely understanding and so sweet about it. She said something along the lines of, "What your going through is really hard. If Lehi makes that easier, then I'm completely supportive and I'll keep calling for updates." What a relief it is to have a doctor that is supportive.

Her appointment was at 9am in Lehi. I had the boys stay at my parent's house while I took Isla to her appointment.  As I was getting Isla out of the car, I could tell that Isla recognized where we were and she instantly got excited. In that moment, I knew I had made the right decision by going to Lehi. We both couldn't stop smiling.

We walked into Oncology and we heard, "Isla!" I looked over to see Isla's favorite nurse smiling. She was the nurse that made Isla her necklace. It felt so good being back. We got into the room and the phlebotomist came in to draw her blood. She got it so fast, first go and Isla didn't even really cry. Another relief. I couldn't thank the phlebotomist enough.

We had nurses coming in to say hi. Isla's favorite nurse took Isla to go pick out toys to play with. Isla was so happy. The counselor came to speak to me about how I was doing. She told me about different programs that could help us financially. 

After the counselor, the dietician came in to talk about Isla's weight. She told me that Isla had gained weight and she wasn't worried about her. She asked what I did to help her eat/gain weight. I told her that I don't say no. If she wants to eat something, I let her eat it. She also LOVES edamame. It is a complete protein and she will eat a whole bag by herself. I just have to pop them out of the shell for her and that takes a minute.

Then it was time for Isla's shot. The first one usually goes in her thigh. She did so well and even cheered when it was done. The nurses helping thought it was the cutest thing. The doctor that was working in Lehi that day came in soon after and told me about her levels. She said that Isla was doing really well.

The only thing that was different this time is that I could tell about 10 minutes after the shot that it was affecting her. She suddenly looked sick and her excitement died down. I put her in her car seat and she started nodding off. Her shots usually don't affect her that bad until later in the week, but today it was almost immediate. Overall though, it was a success. I was so grateful that I stuck with my gut to go back to Lehi. Isla was so happy and that's all that mattered.

Afterwards, I picked up the boys from my parents house and made the trek home. I put the shade up in her window again and she slept the entire way. 

Tuesday - July 15, 2025
The home health nurse said she would be there at 10am. My mother in law happened to stop by right before the nurse came and I asked if she could stay to help me since Jordan had a meeting. We got all her supplies out. The home health nurse came and gave her the shot. Isla cheered again once the shot was done. So cute.

Later that day, Isla got a fever. She was at 101.9 F. I called Oncology and they said if she has a fever of 102 F for more than an hour, we would have to go to the ER... Again. We did everything we could. We gave her Tylenol, we put a damp rag on her forehead, we put her in the bath. She was miserable.

There were so many times where I was mentally preparing myself to take her in. Jordan slept in her room and would check her temperature during the night. She never went above 101.9 F, so we didn't take her to the ER. 

Wednesday - Friday
Wednesday morning she was doing a lot better. Her fever eventually went away. No ER visit! Yay! You could still tell that she didn't feel good, but she was doing so much better than the previous day. 

She barely ate the rest of the week and wanted a lot of cuddles. I had so many different alarms on my phone for her medications and zofran. I was pretty good about staying on top of it because the last thing I wanted was for Isla to throw up. She didn't throw up the whole week, which was a miracle. Another five shots down. Only 35 more to go. 

Even though Isla struggled with the chemo, this week went so much better than previous rounds. I'm grateful! Thank you for reading and being a part of Isla's journey. We appreciate all the support! 

Love, Megan