Monday - September 22, 2025
We had to check in Salt Lake Primary Children's Same Day Surgery at 6:15am. On the way, I felt like my stomach wouldn't stop churning. I think she slept the whole way or she was just very quiet. We got an amazing parking spot! First floor of the parking garage in the front row. That never happens.
We went to Same Day Surgery and it was surprisingly busy. Like hard to find a spot to sit busy. We checked Isla in and waited for around 45 minutes. We let her walk around and sit where she wanted. She was being cute, but also very sassy. She wanted things a certain way and would get angry with us if we didn't comply. We couldn't help but laugh. Isla did not want us to laugh. It was very apparent that she was grumpy from being tired.
They called her name and took us to a room. She was not super happy about having to change into the surgery clothes. The nurses brought a little play ice cream truck that she could get in. That seemed to bring her mood up a lot. The surgeon and anesthesiologist came at different times to talk to us before they took her back. The surgeon talked about the port and answered our questions. This time, the anesthesiologist wouldn't let us go back with her. He pushed her in the ice cream truck to surgery.
It didn't take very long. Maybe an hour and a half? The doctor came out and said everything went great. He said she was waking up now and that the nurses would come get us. The nurses came and we anxiously walked to see our Isla. She was in a hospital crib, not happy. Isla was crying very hard and wanted to get out of the crib. The nurses said that we needed to move from Same Day Surgery to the Oncology floor. Before we left, she was so sad and reaching for me. The nurses said I could hold her. I picked her up and she instantly wrapped her arms around me. She started to calm down a little and rested her head on my shoulder.
They weren't about to take her away from me so the nurses got a wheelchair for me to sit in so I could hold Isla on our way to Oncology. She was holding onto me so tight. I could feel the port in her chest as she held on to me and it made me a little emotional. My baby.
Isla had to stay the night in Oncology so they could monitor her port after surgery. Both Jordan and I wanted to stay with her the entire time. There was one recliner chair, one couch and her hospital crib. Very small room. We got there around 10:15am. She wouldn't let me put her down still, so I sat in the recliner chair. She told me she was hungry and wanted food. I asked the nurse if I could order her breakfast from the hospital. They said that was fine, but she couldn't eat until her records got to Oncology from Same Day Surgery.
It takes time to get the food, so I ordered things she loves. They said it would be 30-40 minutes. The nurses came in about 10 minutes later and said with their new system, Isla's records got deleted while trying to transfer them. So she wouldn't be able to eat until they had her records in Oncology. I'm so sick of the new system at the hospital. I'm sure the nurses are too.
Her food came and she got so excited. I called the nurse in and asked if she could eat. They said they still hadn't received her information, but that it was probably fine. She ate maybe one or two things and then refused the rest. She barely ate anything. It made me stressed. I tried to get her to drink water, she refused. I was diligent though and eventually she caved in to drinking some water.
They had an xbox/tv in the room where we could connect to all our streaming services. Isla only wanted to watch 'Tangled'. We started Tangled and she stayed sitting with me.
She started to perk up and be her cute, silly self around 1pm. She sat in the crib and smiled as she watched Tangled.
Her doctor came to see how everything was going. I honestly don't remember a lot of what we talked about or who all came into the room. That day was very overwhelming. I do know they started her chemo in the port around 2:15pm. You could tell almost immediately that it did not make her feel good. It was really hard to get used to her port at first. I didn't let Isla know, but her port really freaked me out. I could tell that Isla was a little freaked out too.
I told the nurses that with her previous chemo, we had to be on top of giving her Zofran exactly every six hours or else she would throw up. Then I asked if they could please be on time with giving her Zofran. I could tell that she was already feeling sick so I was nervous.
Time passed. My parent's came to visit Isla and bring us food. She was so happy to have visitors. After they left, it was time for her second dose of zofran. The nurses didn't come for an hour and a half. And just like I had warned, she started puking. Now that she gets chemo straight into her blood - her puke, poop and pee are all toxic. It's where the chemo comes out. So when she pukes, we have to wear gloves and deep clean everything. It's not good.
She stopped puking eventually. We were able to get the zofran to stay down and it seemed like she was ready for bed. The nurse told me that she was going to unhook Isla's port from the IV line (fluids) for bed.
I was exhausted and could barely keep my eyes open. We all got ready for bed around 8:30pm. Isla would not fall asleep. When 12:30am rolled around and Isla still was not asleep, I could not take it anymore. I was so exhausted and felt like uncontrollably crying. I looked at Isla's IV line at her port and saw that it was still hooked up to the fluids. The line was under her blankets so I couldn't see it. I thought they were going to unhook her? I went straight out to the hall to find a nurse.
I told them that Isla would not fall asleep and it was probably due to her still being hooked up. The nurse said she was keeping her hooked up so she could get blood from her in an hour. I asked if she could get the blood now and unhook her. She said that was fine. It took about 30 mins for the nurse to come, get blood and unhook her. Isla was asleep ten minutes later.
Tuesday - September 23, 2025
After the terrible night, Isla woke up way too early. You would think that she would be very grumpy, but she was actually in a good mood. It made getting up after hardly sleeping a little easier. She had us turn on Tangled, of course.
We ordered her favorites for breakfast. Bacon, eggs, yogurt and fruit. She wanted to sit in my lap to eat and she basically inhaled the bacon. It's a relief when she eats anything during treatment. She was also in a good mood and I was surprised after how bad last night was with her sleep.
She started Clofarabine earlier today at 9:45am. She just wanted me to hold her during her infusion. I could tell that once they started, she did not feel good.
A close friend came to visit us in the hospital and Isla instantly perked up. She was so excited to see a familiar face. I think she definitely needed it. Then once the excitement wore off, she started to fall asleep in my arms. She kept waking up though so I transferred her to the hospital crib. She held onto my hand and fell asleep holding on to me. I stayed there her entire nap.
My friend left while Isla was asleep. I stayed holding Isla's hand while she slept. The nurse practitioner came in to talk to us and it woke Isla up. It's hard to get good sleep in the hospital. She needed sleep so badly.
The nurse practitioner came in to talk to us about flushing Isla's port by ourselves. Our nurse earlier that morning told us, "Oh yeah and you guys will just flush her port tonight." Both Jordan & I looked at each other like uhhhh what? I looked back at the nurse and said "What do you mean flush her port?" The nurse looked surprised and said "You guys will be flushing her port. Has anyone done training with you?" I responded, "Nope. No one has come to train or talk to us about anything." So the nurse practitioner came in it felt like to do damage control.
She told us that LCH isn't cancer so the nurses/staff don't really know how to handle it... So basically we aren't as important because they don't consider LCH cancer so we got put on the back burner. I get so heated talking about this, but the ONLY difference between cancer and LCH is the way it starts. LCH does the exact same thing cancer does. She has to do chemo, just like cancer patients. She has to have a port, just like cancer patients. LCH is spreading through Isla, just like cancer would. How could she say that Isla wasn't as important?
We then had to do a two hour long training with our nurse on how to flush her port. So stressful. There's more I could say about it, but honestly I'm mentally exhausted and I just want to get through this blog post.
I told the nurses multiple times, "Could you please give her zofran every six hours?" With cytarabine (her previous chemo), she would start throwing up if I didn't give her zofran every six hours. Clorfarabine is more aggressive and like I said before, I can tell that she does NOT feel good during her infusions.
They finally finished training us and told us we could leave. But by then, they were an hour late for her zofran and I kept asking them to give it to her. They either forgot or something because they never brought it in. Isla looked nauseous and I started to panic. I had zofran in the car so I thought if we hurried, we could give her the zofran in the car. We tried to hurry and get Isla in her carseat. But it was too late. She started throwing up all over herself and the carseat. We were too late.
We put Isla back in the hospital bed and I took her soiled clothes off that we had just put on her. I put the clothes in a bag. I called for the nurse and two came in to help clean up. Her puke is toxic, so we needed all the help we could get. Jordan cleaned the carseat while I helped wipe Isla down. The nurse said, "Oh wow, she really does need zofran every six hours." Infuriating. Then she said she would go get it. After 10 mins of waiting I couldn't wait any longer, Isla looked so sick. I told Jordan to run and get the zofran from the car. He ran out of the room.
She can't take a bath with her port accessed, so we could only do a sponge bath to get the puke off of her. Except they didn't have sponges, they had wipes. I tried to wipe it out of her hair as best as I could. The nurse finally came in with the zofran just as Jordan got back from the car. We gave it to her. The nurse let us take a hospital gown to put on her to take her home since she puked over all the clothes we brought.
We couldn't get out of there fast enough. I sat in the back with Isla. She slept the whole way.
We went to my parents house. About two minutes away from their house, Isla started puking in her carseat. I tried my best to catch her throw up in a bag, but with her tilted back in the seat - made it almost impossible. Jordan raced the rest of the way. My dad was there to help. My dad works in the medical field, so it made me feel better about everything. We got her out of the seat and took her inside.
First thing we did was give her a sponge bath. Someone had to hold Isla while I bathed her. It was pretty difficult with all her bandages and trying to not get any water on her port area. Jordan cleaned her carseat.
After her bath and getting clean clothes on, she seemed a lot happier. She wanted my dad to hold her. My dad was able to get her to eat some broccoli. I wanted her to go down for a nap because she was falling asleep in my dad's arms. She said she wanted to sleep too, which is pretty rare. I put her in her sleep sack and put her down. Five minutes later, I heard her puking on the monitor.
I ran into the room and everything that she ate with my dad was all over her bed and clothes. Poor Isla. She was so sad and you could tell she was just exhausted. All three of us went into clean mode. We gave her another bath. The food was really in her hair and it was hard to get it out. We cleaned her bed.
Since her puke is toxic, it makes things more complicated. With all the clothes she pukes on, the hospital told us that we have to do two hot washes to get all the puke out. We had already started a load for the clothes she puked on at the hospital. We did lots of laundry that day.
Eventually, we got caught up with all the nausea medication. She was able to eat at dinnertime. She ate rice. We were all ready for bedtime. I went to bed at the same time as Isla. We slept in the same room as her. I had to get up 2 or 3 times to give her nausea medication. We also had to get up at midnight to flush her port. It went smoothly. Luckily, Isla slept really well. It was a relief.
Wednesday - September 24, 2025
Wednesday went SO MUCH better. No throw up. She ate food. The nurses were super quick with her infusion. She was so happy and it made everything a little easier.
After her infusion, she played with my dad. They did a tea party. It was so cute. She loved having all of the attention from her grandparents. She took a nap with no issues. She even ate a little bit. Wednesday was a really good day.
Thursday - September 25, 2025
I was convinced Thursday was going to be another good day, but it was not. We went to the hospital to do her infusion at 9am. Usually when we check in, they get us right back. But today... It took an hour. We were just sitting in the waiting area, watching every single person get called back except Isla. I got really annoyed and went to the front desk. I asked why it was taking so long and she said that she was going to go check.
She came back and said that we would be going back soon. Another 30 minutes later, they finally called Isla's name. I heard the nurse that called us back say, "Oh wait. She IS one of mine." So they skipped over her name.
When we got to the room where we would be doing her infusion, our nurse came in and said, "Sorry about the mix up with the system!" Then I asked, "What mix up? What happened with the system?" She said that the new system had her in as a doctor appointment, not an infusion? Which doesn't make any sense and we heard the nurse say that she accidentally skipped over Isla's name. So she was lying to us or she was lied to. Either way, I was not happy. Took them a LONG time to get her infusion started.
I was not planning on being there 3 hours longer than it was supposed to and it was time for her zofran. I asked the nurse to get her zofran and they said they would have to get it approved first. I WAS SO ANNOYED. They never did bring the zofran.
We brought up to the Nurse Practitioner that Isla still hadn't had a bowel movement so she prescribed Isla some things and without asking, sent it down to the pharmacy in the hospital right as we were about to leave. I asked if it would be ready by the time we got down there, and she said that it should be.
We left in a hurry so I could get her zofran. We went to the hospital pharmacy and they said it would be a 20 minute wait... I felt helpless. We decided to wait.
We walked to the gift store and that's when Isla started throwing up. She threw up all over herself, carseat, clothes... We had moved out into the hall of the hospital trying to get her out of her seat and get everything under control. The gift shop is by the front entrance of the hospital. People around us didn't even look up. There were nurses and doctors all around us and nothing. I was actually shocked. They walked by like it was just another Thursday while Jordan and I felt like we were drowning.
We had hospital sanitary wipes in the car that Jordan ran out to get. I found a chair and started taking Isla's clothes off and into a bag. I wiped her down with baby wipes. I tried to get all the puke out of her hair. Again, no one said anything or came up. I wonder if this happens a lot and everyone is desensitized? Jordan came back and he started wiping down her chair. Luckily, I was prepared and put a towel down in her seat and wrapped her up until we could get home to bathe her and deep clean everything.
After we got everything settled, I went back up to the pharmacy desk. I asked if our prescription was ready. She said it would be another 30 minutes... I said, "But my daughter is throwing up and we have to go... Please can we get it faster?" The girl responded, "No, sorry we are really busy today." So I told her to forget it and I would have to prescription sent somewhere else.
Honestly, I don't remember much else of the day. We gave her a bath when we got home. I'm pretty sure she threw up a couple more times, but we were able to get it in the throw up bag. I feel so bad for her and everything that she has had to go through. No one deserves this.
Friday - September 26, 2025
Friday was a lot better than Thursday. No throwing up. They were quick to get us in for her infusion. The nurse helping us had mentioned how she had heard about Thursday and how long we waited. She brought it up almost like it was funny. But it was too soon. WAY too soon. I think the nurse caught on that it was too soon by the awkward silence from Jordan & I.
After her infusion, we drove all the way home to our boys. We were so happy to all be together again. It was hard for Isla to adjust to living with a port that sticks out. She's usually on the move, but she still wasn't 100%.
A couple scary things have happened. She will randomly pass out. She was climbing the stairs, passed out from exerting herself and fell down the stairs. I was behind her and it was one of the most scariest moments. Since then, it has gotten better. She has adjusted to having a port. Like how she slides off furniture or sleeps in bed. She is so resilient.
She has to get her blood drawn a few times before her next round to keep an eye on her levels. Her next round is in October. Thank you for being here and supporting our family.
Love, Megan
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