This isn’t going to be one of my long, involved blog posts because I have homework to do and naps to take but I wanted to update everyone a little bit since I’ve been MIA for a lot of the last two weeks unless you’ve contacted me directly (and even then, I’m terrible at replying so I might not have gotten to that yet…).
Last Tuesday, I got my modified t-cells! The actual process was pretty uneventful but as it turns out, I am the first person in this phase of the study, so there were a lot of study people there to make sure that all of the paperwork was completed correctly. That night, my temperature was already rising but it stayed around 99.5. During the day, it would be normal and in the evenings it would rise again, but not high enough to send me inpatient. My parents switched places on Wednesday which meant my dad was the lucky one who got to take me to the emergency room on Saturday. We had gone out for a walk and when we got back my dad started to make lunch. The smell of it made me feel absolutely terrible and I realized I was very cold and just didn’t feel good. 101.9. Off to the ER we went. Between the fever, my lack of a nap (I usually take one after lunch), and a lack of food, I had a terrible migraine for most of my time in the ER, but it went as smoothly as possible otherwise and I moved up to the oncology floor about 5 hours later. There are quite a few interesting differences between CHOP and Hopkins but I’ll save those for my more detailed post. The week was pretty uneventful – lots of sleeping, drinking, Rummykub, and forcing myself to eat. Every time my temperature got above 100.4, I’d get Tylenol, which would make me sweat like crazy half an hour later when it broke my fever. Right before the Tylenol wore off, I would get a headache as my fever would start to come back. The fevers and the really sweaty uncomfortable times when my fever broke were actually the worst part of the week. The doctor in charge of the study came in at one point and said this is when people start saying “My kid isn’t sick enough, it must not be working” but really it is just a sign that all the chemo did its job and the t-cells didn’t have too much leukemia to attack so my body didn’t have a ridiculous reaction. They have to tell you the scary side effects and freak you out, but not everyone gets them. I am definitely glad I went into it scared because it really was much better than I expected – no visit to the PICU! On Tuesday night, I took some Tylenol before bed, and when I woke up in the morning, the fever was still gone! The doctors told me if it didn’t come back by the next day (Thursday), I could leave. On Wednesday night, my temperature went up, but not quite to a fever and it went back down within a few hours. That made the doctors hesitant to send me home in the morning, but they told me if I stayed fever-free until 4pm, I could leave. My aunt came to spend the day and Phillip and my friend Alicia came to visit (in their Karen’s Crusaders shirts!) so the day went by pretty quickly. They all encouraged me to eat and walk laps, and Phillip and Alicia did the Cupid Shuffle in their t-shirts (yes, there’s a video). My friend Lauren sent me a picture of herself wearing her t-shirt after her 10k over the weekend and my friend Amanda sent me an adorable kitten selfie with hers. I have all the Philadelphia shirts and my mom is working hard to distribute all the rest to everyone who has paid so far. I can’t wait to see more pictures! Anyway, I was still fever-free at 4 so we got to head back to the apartment! It’s so nice not to have vitals and to have more flexibility than the hospital menu and the walking-distance restaurants. I don’t go back to clinic until Tuesday, and by that point they might have the results from some of the study labs to see what’s going on. This update wasn’t as short as I imagined it would be but trust me, the real one will be much longer, with lots more random funny stories! Thanks for all the thoughts and prayers and love over the past few weeks, I couldn’t do this without you guys!
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
April 2022
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