Once again, I’m way behind on the blog posts… this past term was easily my hardest and most frustrating quarter at Drexel yet, and I didn’t have as much free time as I would have liked. Right after my last post, we went on our annual family ski trip. Even a week before we went, there really wasn’t much snow but by the time we got there, we were able to ski. We usually cross-country ski but we went downhill skiing on Saturday. My knees were bothering me and my legs were weak, so I was a little worried about the heavy downhill skis. It took me a bit to get comfortable, but it was a lot of fun and I did much better than I expected. On Friday, hours before I left for the trip, I was at CHOP to check my platelets. They still weren’t thrilled about me skiing, so even though my platelets were slightly above their threshold of 50 (for skiing, that’s still nowhere close to normal), they gave me a transfusion for an extra boost. As it turns out, I didn’t need them for skiing because I didn’t fall, but I was glad I had them on the way back to our lodge when the roads were very icy and snowy. Even though we weren’t going fast, our van slid around and rolled, stopping on its roof, and we got a very real lesson in the importance of seatbelts. We were all hanging from our seats when we stopped instead of thrown around and dropped on our heads. We were able to walk away unharmed (except for a small scratch on my dad’s hand), and even though the EMTs insisted we would feel awful the next day, we rolled slowly enough that we weren’t even bruised. Only my legs were sore, and that was definitely from the skiing. Getting back to our lodge took a while because we didn’t have cell service, but everyone who stopped to help was very helpful and the lodge saved dinner for us. That was certainly not how any of us had pictured that trip, but if anyone needed a reminder that seatbelts save lives, there you go. We were very lucky; the van was not. You’re welcome for the skiing picture instead of the van. The next weekend, there was a big snowstorm in Philly. I spent most of it catching up on homework and finally finished my last final paper from fall term. I also went sledding down the Rocky steps at the art museum which is a Philadelphia tradition. Even though the snow was starting to melt by the time we got there, there were lots of people sledding on anything they could find: cafeteria trays, cardboard, boogie boards, air mattresses, trashcan lids, etc. At the end of January, I went home for my friend’s baby shower and my two month appointment at NIH. We’ve learned to make sure that the room is ready and the consent form is signed before they give me the Versed, so it went pretty smoothly. After my appointment, we got lunch and went to Target, but I barely remember any of it because the Versed wasn’t fully worn off yet and I think I got a bit of a spinal headache from doing so much walking so soon after a spinal tap. Everything from that test looked good. There was no sign of any leukemia and there were still detectable modified T cells in my blood, bone marrow, and spinal fluid. Starting in February, I was at Drexel for six weeks (including weekends) in a row which is probably my personal record. I went ice skating, ate a lot of tacos, hung out with my friends, volunteered, and watched all of Fuller House. My dad was working on a project in New Jersey, so I had dinner with him a few times and even got the chance to meet some of his coworkers. Back when we ordered Karen’s Crusaders shirts, they ordered quite a few and sent me photos of the group wearing them. It was such a thoughtful gesture from people I had never met, so it was really nice to finally meet some of them. I also finally had my first visitor at Drexel! Mandy and I spent an entire day wandering around the city. I could barely move the next day, but it was worth it. I used google maps to figure out approximately how far we walked and it was almost 10 miles! It was a beautiful day, and we spent a long time at Magic Gardens. We also wandered around Reading Terminal Market taking turns buying food to share so we got to sample a good variety. I’ve really enjoyed visiting my friends at their schools so it was fun to show someone around Philly. My knees have been bothering me and I finally got tired of waiting and watching them so I asked for a PT evaluation during one of my appointments at CHOP. The therapists there are used to kids on chemo, so they thought I was relatively strong. I decided to do the therapy at the Drexel gym because it’s more convenient, but they’re used to working with athletes who are much stronger than me and the therapist seemed surprised by how weak I was. I’m getting stronger, but it’s been a painful process and I’m really hoping there’s not another underlying issue besides muscle weakness. In fall 2014, I was so weak after my septic shock incident and time in the PICU that I couldn’t completely straighten my legs. They got a lot better and I didn’t give it much thought, but last week my therapist noticed I still don’t get completely straight, which puts a lot of tension on the knees and could be a significant contributor to the knee pain. I didn’t have any in-person finals, only essays, so I was home for two weeks (finals week and spring break). It was nice to be home where there aren’t as many stairs since they bother my knees and my grandma is visiting so it was nice to be home for longer. I had an appointment at NIH for my three month tests on Wednesday of finals week. What I thought were bad allergies turned out to be a fever, so they rescheduled the tests for a week later and sent me home with antibiotics. Luckily, my ANC was high enough that they didn’t keep me overnight. Once again, I was working on final papers with a fever… hopefully finals week of spring term will be better. Even so, my grades were better than I expected which was a nice surprise after a challenging term. My dad and I went on a short road trip to Fallingwater and Kentuck Knob, two houses designed by Frank Lloyd Wright. They were really cool, and there were a bunch of pretty parks nearby that we explored as well. The weather was great and it was nice to get away for a few days. When we got back, I had my rescheduled appointment at NIH for my three month tests. Normally, they put topical numbing cream on my hip and spine before I take the versed, so I don’t even feel the needle for the local anesthetics. This time, the fellow doing the procedure insisted that they don’t normally do that and just did the procedure without them. Once the local anesthetic started working, it was obviously fine, but getting to that point was more painful than usual, which was annoying as I was trying to fall asleep. There was also a very chatty nurse who kept talking loudly. Overall, not the best procedure experience (though certainly not the worst). Luckily, the results were worth it! They took a week, but I finally got the call that I’m still in remission. My doctor and one of the research nurses called me together, which was different than last time so I was especially nervous until they gave me the results. I have persistent modified T cells in my blood and bone marrow (they didn’t have spinal fluid results yet, but weren’t expecting it to be a problem), no sign of B cells, and my counts are otherwise almost normal.
My first week of spring quarter is over, and it was a hectic one. This term is going to be a lot of work, but I really like my classes so I’m hoping it won’t be too bad. I’m a little bit worried about one of my biology classes because all of my classmates are bio majors. I finally got into Ballroom Dancing which will be interesting, and I love my public health class so far! I’m also taking an editing class, and we get to work with a non-profit of our choice so I’ll be editing something for Cool Kids Campaign which I’m pretty excited about. My next tests at NIH aren’t for another three months, which is exciting and terrifying at the same time. I also only need bloodwork every month instead of every other week. I’m looking forward to fewer needles but three months is a long time to wait for reassurance that things are still okay. In the meantime, I’ll be enjoying spring and (im)patiently waiting for the results of the new deeper sequencing tests that they’re running on my bone marrow. I’ll keep you posted! The only other exciting news I can currently think of since my last post is that my hair is getting pretty long and even better, my roommate got a kitten! I was here the most last term because I was in three online classes, so I spent the most time with him. He has his incredibly annoying moments but he’s also super cute. He’s probably twice this size now but this is one of my favorite pictures. Anyway, that’s it for now! Thanks as always for the continued support!
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Natalie
4/4/2016 09:12:26 pm
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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
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