It’s a good thing I haven’t been planning too far ahead recently because every time I think I know the plan, something changes. On Friday afternoon, less than 24 hours before I’d been planning to temporarily move home from Drexel, my mom asked me if anyone from NIH had called me since someone called home but didn’t leave a message. Nobody had, so we didn’t think much of it until my dad said he got a message at work and they said my t-cell infusion would be a bit delayed. My parents called to tell me, but at that point we still had no information about how much of a delay or what happened. Luckily, my doctor at NIH seems to be available anytime we need her so around 9:30 Friday night we finally had a better idea of what happened so we could decide whether or not I should still move out the next day. There was an issue at the facility that manufactures the cells. It didn’t directly affect my cells (I had been worried they would have to harvest more), but it set all of their manufacturing schedules back a few weeks. After rushing to get all the preliminary tests done and my cells harvested, with no choice about scheduling, now they are giving me options for my infusion because of the delay! I’ll be starting the low-dose chemo prep either November 21st, 28th, or 30th, with the cell infusion four days later followed by two weeks inpatient. I’m planning to choose one of the later dates, which will allow me to spend Thanksgiving at home or visiting family while still getting out of the hospital before Christmas! Pretty good timing after all! I need another bone marrow aspiration between now and then to see how things are progressing. I still have no symptoms, but if the results show a lot of growth I might get a little chemo to keep it under control. That test hasn’t been scheduled yet but I’ll post another update when we have a finalized plan (if there’s even such a thing). Since I had been expecting to move home on Saturday afternoon, I had made quite a few plans in Maryland for the weekend so I came home anyway, but on the bus instead of in a car filled with all of my stuff. I celebrated my friend’s birthday in College Park and went to Lawyer’s Farm, which was having a fundraiser for the American Cancer Society. The corn maze was Maryland themed, featuring the state, the flag, an Oriole, Black Eyed Susans, Governor Hogan’s face and #HoganStrong. It took us about an hour (and three miles) to find all 24 checkpoints and we had a lot of fun! We also tried the pumpkin cannons, and the governor and I decided that if I could shoot my cancer cells like I could hit the targets with a pumpkin cannon, I’d be cured. I’ll be heading back to school tomorrow and plan to stay for about another week before moving out and then I’ll hopefully be able to travel a bit before my infusion. I’ll be continuing my classes online, which hasn’t been a problem so far. It’s a lot easier now that I’m finished with midterms! I’ll probably go to some of my classes this week but others I’ll just do online so I don’t have to keep explaining the changes in plans. A normal diagnosis involves immediate hospitalization and chemo but once you’re in the land of trials it is a bit more unpredictable. I was mentally prepared to move out this weekend so the change in plans threw me off a bit but I’m looking forward to quite a few events at school this week that I was previously unable to attend. Thank you all so much for your continued support and prayers (and if you have time, send some to my uncle and grandma as well)! Love you all
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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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