This past Monday marked six months since my modified T-cell infusion, so my mom and I were on the road to CHOP at 6am for a spinal tap and bone marrow aspiration. It’s hard to believe it’s only been six months, considering all I’ve managed to do in that time, but I also remember it so clearly that it doesn’t seem like that long ago. We were a little nervous about this six month checkup because it was my six month post-transplant checkup last June when they found my leukemia had found its way back and I lost my transplant poster child status. Even though I’ve been getting stronger and feeling great, it’s hard to fight that worry in the back of my head. I wanted to write this post two weeks ago, but right before my other six-month checkup, I wrote a post that pretty much assumed everything was fine, and then a week later I was sharing awful news. My anxious mind wouldn’t let me write a post this time until I knew the results – I didn’t want to jinx anything. We were at CHOP all day on Monday because I needed the bone marrow aspiration and a spinal tap. I got my usual oral Versed and slept through the procedure. After I woke up, I got Benadryl to prevent an allergic reaction while they gave me my monthly IVIG infusion (antibodies) and I went right back to sleep. My mom made sure I ate some food whenever I woke up, so I didn’t sleep through the entire afternoon like I have after some appointments. I was a bit sore, but I’ve been trying to walk around during the past few days which has helped a lot. Tomorrow I might even be able to wear something other than yoga pants! Right now, any pants with a tight waistband press right on the aspiration site which is rather uncomfortable. We got a call from my doctor at CHOP yesterday saying that the preliminary results looked good, but they were still waiting to hear about the minimum residual disease (MRD) test from Seattle. Around 6pm tonight, we got another call that my bone marrow was MRD negative! I wanted to jump around with excitement, but my hip is still a little sore for that. My CART cells appear to still be working, because they could not detect any B cells in my blood or any baby B cells in my bone marrow. There is also no evidence of any cells with the CD-19 protein, which is what the CART cells target, and no sign of leukemia! Since I still don’t have B cells, I need to continue getting my antibody infusions. I’m currently getting them monthly but we are hoping to transition over to home infusions, which would be more frequent but would not require the trip to CHOP. More frequent infusions would keep my level more stable, rather than spiking it once a month and letting it drop off until the next infusion. I only need to follow up at CHOP every 3 months now, so it would be nice not to have to go up every month for Benadryl and IVIG. We’ll see! A few weeks ago, I came home for an eye appointment at Hopkins. Getting home in the middle of a snow storm was an adventure, but I made it. My appointment was supposed to be in December, but it took a while to get an appointment that worked with my school schedule. I really hate people touching my eyes, and I’m not used to it since I haven’t been wearing my contacts. My body was so overwhelmed that I got dizzy and passed out. The good news is my prescription hasn’t changed! While I was home, I got to ski a little bit which was nice but I’m ready for spring now. The second half of my term at Drexel flew by. We have quarters, which are only ten weeks plus a week for finals. I love it, but it definitely goes by fast. Not long after my last update, I got the flu. I thought I just had a bad cold, but when I woke up at 3am sweaty and hallucinating, I knew I probably had a fever. Lucky for me, Phillip is practically nocturnal so he was awake to take me to the emergency room. As I quietly packed a bag and left my apartment without waking my roommate, I felt like I was running away. I snuck back in around 7:15, right before she woke up for work. At Hopkins, a fever usually means at least a 48 hour admission, so I was pleasantly surprised when CHOP gave me fluids and let me go after 4 hours with a prescription for Tamiflu and a note excusing me from classes until my symptoms resolved. Since half of my classes were online, I could still do my work for those, but I missed a midterm in one of my in-person classes. By the next week, I was going stir-crazy and felt better enough to go to class. At the beginning of the term, I barely had enough energy to walk to class two days a week and I wondered if going back to school was a good idea. A few weeks ago, I finally had the energy to go to some activities, reconnect with more friends, and take the bus to center city to walk around just because I could! It was a wonderful feeling, and as the weather improved, I remembered why I liked the city and being able to walk everywhere. I know being at school made me stronger faster, and I’m glad I was there. Right now, I have spring break before I start a full-time co-op (internship) on Monday, which will last until September! I interviewed for a few positions in Philadelphia and received a great offer there a few weeks ago. However, I made a difficult decision to turn it down because I was waiting to hear about a job I liked even more in Maryland. After all the uncertainty in my life over the past few years, I was tempted to take the offer and stay in the city for the summer, but I’m glad I took the chance on the other job. I felt a little bit silly leaving the city after I was away for so long and couldn’t wait to get back, but I am really looking forward to my technical writing job here at home. Unlike last summer, when I was constantly worried about germs, I can visit my friends and go to concerts this year, plus remain involved in Cool Kids Campaign activities and planning Camp Sunrise and SunSibs. I still didn’t feel like I really found my place again at Drexel because I didn’t have the energy to do so, but I’ve made progress and I know when the fall comes around, I’ll have the energy to go to the activities fair at the beginning of the term and find plenty of things to get involved in! I’m so thankful for my few close friends at Drexel for welcoming me back this term and making the transition easier. You know who you are, and I love you guys so much! Break has been fun but relaxing so far! I went to the Franklin Institute to see the Body Worlds exhibit with a friend from camp, and my family had dinner in Annapolis with my best friend’s family. I finally got to go to a camp planning meeting in person, instead of via FaceTime, and I have plans to see a few more friends later this week. I’ll also be working on my blog! During my Electronic Publishing class this past term, I discovered the A-Z Blogging Challenge. Every year, thousands of bloggers challenge themselves to post every day in April except for Sundays. This leaves 26 days, one for each letter of the alphabet. I’ve started brainstorming topics, and with some help from friends and family I already have one for almost every letter. I’m still missing a few, including L R and Z. It surprises me that some common letters are left, while I struggled to choose between many options for letters like C and F. If you have any ideas, shoot them my way! That’s about all I’ve got for now! Thank you as always for all the support and for reading my updates! Six days until my month of blogging begins!
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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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