Wednesday - June 18, 2025
Her appointment was at 1pm at Primary Children's in Salt Lake City. She usually goes down for a nap at 1pm, so that was a little frustrating. The parking at Primary Children's is horrendous. I drove through what felt like every aisle to find just one parking spot. I finally found one of the very top of the parking garage in the sun. It was so hot already and I was stressing about how hot it would be when the appointment was over.
I had never been to the Oncology department in the Salt Lake City Primary Children's, only the one in Lehi. So it took me a minute to find it. We didn't have to wait in the lobby very long and they took us to our room. It must have been a busy day because we waited a long time. I was by myself with Isla and sometimes it can be hard to keep her entertained.
They came in to draw her blood. It did not go well. She was in so much pain. I think they had to poke her twice. It broke my heart and I was holding back tears trying to be strong for her. It's hard to explain but every little painful thing she has to go through is like a little cut in my heart. One little cut isn't a big deal, but after everything this year, I feel as though I have one thousand little cuts. It doesn't take much to send me over the edge these days.
Her blood levels were not normal, again. But it wasn't bad enough for us to stay so they said she could get the Cytarabine shot then we were free to go. We were able to give her zofran for the nausea.
I took her out to the very, very hot car. I put the windshield sunshade in her window, I made sure the vents were pointing in her direction, I tried to make her as comfortable as possible before beginning the two hour drive home. Because of traffic, it took 2.5 hours. Luckily, she slept almost the entire time. I was stressing out though because I couldn't see her and the sun was on her side of the car. I did have to pull over once to make sure she wasn't too hot. The rest of the night was fine.
Thursday - June 19, 2025
The boys had a cold the last week and I hoped and prayed that Isla wouldn't get it. She did and woke up super stuffy. One thing after another. I need to be better about quarantining our family before Isla's treatments. I think the week before her treatments, I need to be very careful with what our family does because it's not fair to Isla. But overall, she had a pretty normal morning.
One of our new angel neighbors randomly brought us dinner that we could heat up. We really did move into the most incredible neighborhood. They have already been so supportive without knowing us for very long. We were worried about moving so far away from Primary's, but we kept having a good feeling about this city. I'm glad we moved here.
Isla didn't eat much for lunch. That's pretty normal during treatment. I put her down for her nap around 1pm. The home health nurse texted me and told me that she would be at our house at 4pm. Luckily I had the day off from work for Juneteenth, so I was able to spend one-on-one time with the boys while she slept.
I lost track of time, then there was a knock on the door. The home health nurse. Jordan got the door and I ran to get Isla out of bed. As I was getting her out, she looked miserable and so sick. She also felt incredibly warm. I felt a wave of panic. I took Isla downstairs to the home health nurse. She took her temperature and it was 103 F. Worse than last time. She told me to call Oncology. Oncology told me to take her to the ER, but that she could still get her chemo shot. She got her chemo shot, I packed water/snacks/food and then I took her to the ER.
It was our first time in this Emergency Room. The nurses were very kind, but I could tell that they didn't get a lot of tiny little cancer patients. The nurse was trying to explain to me that he was going to swaddle Isla to take her blood. I told him, "Oh, I can just hold her. That's what we usually do." He told me I could hold her only if I held onto her tightly so she didn't move a lot.
I put her on my lap and held her arm and legs down. It took them a looooong time to get blood. I know it's hard to get blood from a very small human, but she was screaming. She had just gone through the same thing the day before. It felt like an eternity. So much pain for a little girl. They finally got it. They also took a swab of her nose and then left the room.
We waited about 3-4 hours in the ER total. I turned on the movie Tangled on my phone and she laid there watching. I knew I was getting text messages but I didn't want to interrupt her movie. She held my hand for a long time. I could tell she was getting hungry so I pulled out all the food I packed. She had A LOT of fruit snacks and goldfish. I brought other things too, but that's all she wanted. I was able to get a picture of her to send to Jordan for a quick update.
The ER doc eventually came in and told me that he had been talking to Oncology at Primary Children's. He said that Isla had Human Metapneumovirus. It's a cold, but with her blood levels so low - It's really dangerous for Isla. We had to stay in the ER until her fever went down or her blood levels went up. Her fever went away and we were able to finally leave.
I had to give her Tylenol every 4-6 hours. Ibuprofen is not recommended while she is on Cytarabine. I tried to feed her when we got home, but she didn't eat much. I woke up in the night to give her Tylenol.
Friday - Saturday
She fought her cold and kept getting the shots. We stayed at home most of the time. Here and there I would take the boys out, but we tried to relax. I personally was physically and emotionally worn out after the week.
The home health nurse was amazing! She brought Isla "My Special Aflac Duck". Aflac created an animatronic duck that interacts with kids and has all these medical tools that are used during cancer treatments. Isla loves playing with her duck and knows how to use all the tools in the bag. The only thing Isla doesn't know about is the port. Sometimes I'm so grateful that Isla doesn't have a port. These ER visits would have been a lot scarier if she had that, but maybe they would have been less painful with no pokes.
Overall, I still think we picked the best form of treatment for Isla.
Sunday - June 22, 2025
Last day for her shots! I had so many alarms on my phone for all the different medications I had to give Isla. I was on time with zofran every time, but it still wasn't enough. At about 8:30pm, I heard a weird sound coming from the monitor. I asked Jordan, "Is Isla puking?" He ran upstairs and yelled for me. She had puked all over herself and her bed. He carefully took her to the bath and I dealt with the puke in her bed, sleep sack and pajamas.
As weird as it sounds, her puke didn't smell at all. She threw up what we had for dinner, but I couldn't smell any of it and it really helped with cleaning it all up. Sorry for the visual, but there were a lot of chunks that I had to clean up with no smell. Small miracles. She couldn't have her next dose of zofran until 9:30pm, so Jordan cuddled her on our bed and turned on a movie. I got her a puke bowl and worked on the laundry and getting her bed ready. She threw up 3-4 more times before her next zofran dose. She is so tiny and it's so sad when she throws up.
You could see a huge difference in Isla after she got zofran. She was so happy and giggly. It made us happy to see her happy after the crappy week she had.
It might not sound like a lot, but this was probably the hardest treatment week for me. Maybe because of the move and still adjusting to everything, but I struggled. What gets me through is my kids, Jordan's support and seeing Isla improve. Thank you for following her journey!
Love, Megan
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