Actually, I don’t buy bananas at all because I don’t like them but that’s not really the point. Over the past week, the plan has changed at least once every 48 hours and the song Green Bananas popped into my head as I started to write his update. Every time I try to plan even a day ahead, part of my plan gets changed. I’ve only heard the song a few times but that line always made me laugh, though looking at the lyrics this morning I realized the song is much sadder overall than I thought. Anyway… I posted my last update right before I left for camp. I’m so thankful that I was able to get away for a week and be around such an inspirational group of patients and survivors. Under the Sea was a great theme for activities and I love our shirts – thanks Muriel, I hope you were happy with the way the week turned out! One night, we took a field trip and had the aquarium to ourselves for three hours. One of my friends was actually in Baltimore that night and tried to go to the aquarium but couldn’t. Sorry! I’ve already been twice this year when I was living in Baltimore in the winter but it was still a lot of fun! For the second year in a row I was in charge of an activity called Newsletter, where the kids can draw pictures, write stories, interview each other, and (most campers’ favorite) gossip! Each night, I put all of the submissions together, along with photos from the day and games/fun facts related to the theme, into a newsletter which is on the tables the next morning at breakfast. Even though the activity staff was smaller than usual this year and therefore stretched a little thin, they were incredibly understanding on the few days that I just needed a nap. Cabins have an hour rest period each day, but activity staff frequently spends these periods getting ready for afternoon activities or taking the opportunity to try out the other activities – climbing the rock wall, painting pottery, and tie-dying for example. I made it almost to the top of the rock wall, which I was happy about since I haven’t done anything like that in more than a year. Also, shout-out to the amazing Morgan for letting me sleep in but waking me up just in time so that I didn’t miss breakfast! You rock! After about a day of catching up on sleep, I got to hang out with one of my best friends before I headed to Hopkins and she headed to school a few days later. My family also joined some of our neighbors for cornhole and crab cakes, which was a great evening before we checked in to Hotel Hopkins on Monday. We were a little late to our appointment because I hadn’t finished unpacking from camp or started to pack for Hopkins, and choosing food to bring with me was difficult when, as I told my parents, just the idea of being in the hospital makes me lose my appetite. Clinic was crazy (but the people-watching was great!) and my spinal tap was hours late so we were glad we didn’t rush. I headed to the inpatient side of the 11th floor in the early evening, though I don’t remember it thanks to the Versed. I received a few other chemos hours later. One of them is red, and when I had it during my first treatment, I was asleep. I woke up and went to the bathroom before anyone told me my pee would be pink, which really freaked me out! This time I knew what to expect, and within 15 minutes of getting the drug my pee was a nice grapefruit pink. I didn’t expect the effect to be that quick! I took a picture because the green pee was such a big hit in the fall, though it looks more orange in the picture than it did in real life. My chemotherapy plan is outlined by day. Since I didn’t get my chemo until 10pm on Monday, day 1 ran until 10pm on Tuesday. The drug I was supposed to get on day 2 can cause allergic reactions so they like to give it during day shift when there are more nurses and doctors on the floor so they decided they were going to wait until Wednesday morning. I was a rather annoyed that I was wasting a day in the hospital but two of my friends from camp braved the terrible rain and flooding (I hope none of you reading this had any significant damage!) and came to visit which made the day a lot better. My doctor came in to see how things were going and to deliver some news: CHOP (Children’s Hospital of Philadelphia) called. They wanted to see me later that week to do a bone marrow aspirate and biopsy and a spinal tap, along with a lot of other bloodwork because they have a space in the CAR T-cell study sooner than they expected. The December estimate that I’d been given before was for the study that CHOP is running, which does not have a 5% blasts requirement. The other study is also at CHOP but is sponsored by a drug company and just opened their Phase 2. It has a 5% requirement at the point of enrollment and is the CAR T-cell study that was recently classified as an “FDA breakthrough therapy.” My doctor wanted me to go up as soon as possible, before the day 1 chemos had a chance to do too much, because at this point having more than 5% blasts meant getting my modified cells back earlier. CHOP asked that we stop all chemo/steroids because of the study, so while the doctors at both hospitals figured out the rest of the plan, I sat at Hopkins on fluids. When I say fluids, I mean lots of fluids – more than 4 liters a day! They didn’t want to send me home until they had a plan, plus they were still watching my labs closely for any signs of tumor lysis (breakdown of lots of cells from the chemo). I had a few more visitors (thank you, thank you, thank you!) and played card games with some nurses and another patient on the floor who is around my age. I also did a bunch of work for Cool Kids, which was great to keep me busy. On Thursday afternoon, the doctors finally let me leave, with plans for an 8:30am appointment at CHOP on Friday and an appointment back in the Hopkins clinic on Monday (tomorrow). My experience at CHOP this time was much better than a few weeks ago. They’re not used to people asking to do procedures on the floor so they were very hesitant when I insisted I only needed a little Versed and I’d be asleep for the whole thing. They agreed to try it, but told me I couldn’t eat or drink anything just in case they needed to give me something stronger. After getting up at 5:15am to drive to Philadelphia, I was pretty hungry while we discussed the 24 pages of study information with the doctors. I learned a lot more about the cell modification process and the expected side effects. I don’t have the paper in front of me right now so I’m probably forgetting some stuff but even the short version is going to be long. To modify the cells, they insert a virus with some DNA that makes the cells attack the CD-19 protein which is on my B-cells (including my leukemia cells). The virus is actually a stripped down version of HIV, which takes advantage of some of its properties without giving me the bad parts of HIV like the contagious part. They grow the cells until they have the right amount for my body size and then they run a lot of tests to make sure the cells are safe. This whole process takes a few weeks. I’ll have a few days of chemo when I first get up there to knock down my leukemia a little more. The less I start with, the less there is for the T-cells to attack, which means less stress on my organs from the dying cells. Like a bone marrow transplant, getting the cells isn’t very exciting. I don’t even need to be inpatient for it! They’ll watch me in clinic for an hour or two to make sure I don’t have an allergic reaction and then I’ll get to leave. Within a few days, I will get a very high fever, like 104+, and feel achy and overall awful. Most people compare it to a terrible case of the flu. Some patients have trouble maintaining a good blood pressure, and the medicine to fix that can only be given in intensive care. So far during all of my treatments I’ve avoided the PICU but I’m mentally preparing to have to go this time around, since my blood pressure runs low already. Some patients have needed IV nutrition and others have needed oxygen or even ventilators. Some have a lot of stress on their organs and need certain drugs to help them. A few patients have had hallucinations or confusion that can last up to a couple days (they think this is related to all the proteins breaking down) but luckily aren’t permanent. Hearing all of these potential side effects is absolutely terrifying, but it’s certainly better to be prepared and go in knowing what kinds of things to expect. I can’t imagine being one of the first couple patients. CHOP has only done about 35 of these therapies which isn’t many in the grand scheme of therapies so there is a lot left to learn, but they know a lot more now than two years ago! As I learned from my transplant, it’s nice when things are easier than expected but sometimes that means things aren’t working as well as they could. The fever/flu tends to last 1-2 weeks and then I should be able to be discharged. I originally heard that I needed to live near CHOP for 6 weeks, but on Friday they said to expect 4. The last two weeks I could go home since I live fairly close (not across the country), if I’m doing well, and make the trip to Philly twice a week. After the 6 weeks, most of my tests can be done from Hopkins but I will still need to go to CHOP occasionally for bone marrow checks (and I’m sure Hopkins will do some of their own as well). I should have an expected treatment date from CHOP within the next week, and from there I will have to figure out how that affects my classes and internship. The date will also determine what drugs Hopkins gives me in the meantime. Some medicines can’t be given 4 weeks before I receive my cells while others can be given up to a week before. Now that I’ve explained what to expect, I know the big question remaining is how likely is this to work/be a cure? That’s anybody’s guess at this point. It works for at least a little bit on most people, but not all – the cells haven’t grown in a few patients. The therapy is new enough that the first patient only received her cells back 2 years ago. She is still in remission and still has CAR T-cells in her blood which is great news. Most of the other patients are still in remission as well, though they aren’t nearly that far out from treatment. The few people that have relapsed have been for 2 reasons. The first reason is if their T-cells don’t last. There isn’t a way to predict who this will happen to, but they can tell from bloodwork when this is starting to occur and then they consider other options while the patient is still in remission (no evidence of disease). The second reason is if the leukemia finds a way to hide from the T-cells by no longer expressing the CD-19 protein that they are trained to attack. This way is even harder to predict because the T-cells are still present in the blood, they just can’t see the leukemia. My bone marrow aspirate/biopsy and spinal tap at CHOP went well – everyone seemed shocked by how well the Versed worked for me. They had three syringes of Versed to give me if they needed it but I was out after just one. At Hopkins, I usually get to sleep it off for an hour or two but they woke me before an hour was up and told me to go to my ECHO (a heart test). The study needs to be sure that my heart is strong enough to handle a little stress from the T-cells. I also needed a lot of bloodwork to make sure everything meets the study criteria. When I say everything, I mean everything. My nurse somehow combined a few labs so she didn’t need to draw quite as much, and the total was still over 40 milliliters! Normal labs are less than 5, so that was a lot of blood! My hip was pretty sore until the next morning and I was definitely tired from the blood loss but otherwise it wasn’t bad. While my dad and I were on our way home, my mom called: “so two nights at home are good right?” Apparently the preliminary results from the bone marrow aspirate at CHOP showed that I still had a decent amount of leukemia cells so Hopkins wanted to resume chemo as soon as possible to keep the induction as intense as they could. I was disappointed to not have my whole weekend free because I had already started making plans but I enjoyed my second night home and got to see Jenn again before she left for school, which I hadn’t been expecting. I had breakfast the next morning at The Waffle Truck with two of my friends. To my local readers - if you’re ever in Clarksville on a Saturday morning, I highly recommend it. Blueberries and Nutella on a waffle may look and sound a little strange, but it was absolutely fantastic and was the most food I ate at once in days. When I got home, I repacked the few things that I had unpacked and headed to Hopkins. We are in room 3, which overlooks the helicopter pad. Luckily it’s a pretty quiet weekend for helicopters because they’re pretty loud. It’s cool to watch the first few times but then you start to feel sorry for whoever is arriving in a helicopter. Most of the flights we’ve seen this weekend appear to be practice flights – they are a little rough on the landing, they only land for a minute and nobody gets out. I got my day 2 chemo yesterday afternoon, and I’m back on the steroids, nausea meds, etc. that I started on Monday. My counts have looked good overall, except for a big spike in my glucose because they were giving me sugar fluids even though I was eating/drinking enough to keep my sugars up on my own. According to the doctors this morning, the preliminary results from my bone marrow at CHOP show that the leukemia in my marrow is up around 80%. I’m not sure if that is blasts or funny looking cells. The 24% from a few weeks ago was blasts, but some other number in the same test was 42%. I should have a more exact answer in the next few days. Since I’ve been here, my red count has actually gone up, which is good because it was pretty low after the crazy amount of blood CHOP took out of me for study tests. My ANC is just below the normal range at this point as well. Now we sit while they watch my electrolytes. Everything has been fine so far, but my potassium has been slowly rising. This is overall a good thing because it is a sign that the chemo is killing my leukemia. The level is still far from concerning but everyone here is incredibly cautious so I will sit here on fluids for a while and be bored and take sunset pictures. I was really hoping to go home today because I would have to come back to clinic tomorrow for chemo anyway and I doubt much is going to change between now and then since I didn’t get any poison today. I bother the doctors every time I see them about when I can go home, and the attending doctor changes tomorrow so maybe I’ll have more luck with him. My mom and the nurses are lobbying with me. The part that I find confusing is that they say they’re worried about the electrolytes and tumor lysis because the CHOP bone marrow still showed such a significant amount of disease. However, they haven’t done their own bone marrow test in over a month, and on Monday when they did a spinal tap they didn’t do a bone marrow because they said it didn’t really matter. Now that they have information from CHOP, apparently it matters. Hopefully they’ll be satisfied that my counts have stayed stable so far and will let me leave after my chemo tomorrow. It’s so incredibly frustrating to be here when they aren’t doing much for me that I couldn’t do at home (other than take my blood) and I still feel relatively okay. A lot of my friends leave for college soon and I’d really love to be home and able to spend time with them plus enjoy the nice weather. I joined some of the nurses and other patients this afternoon for a few rounds of Spot It which was a lot of fun and brightened the day. Also, thanks to everyone who has played me back in words with friends and all the other online games to keep me entertained! If you’re still reading this, I’m impressed. I know this has been an incredibly long update filled with more medical information than a lot of you care to understand. Imagine having 24 pages of information crammed into your head in less than 2 hours, then being asked if you’re ready to sign the papers. One last thing that I forgot to share in my last post is that my boyfriend contacted a bunch of my friends and my brother and surprised me with a big poster of pictures. There’s a picture of me in the middle and pictures of me with all of them in a collage around it to represent my support circle. I’ve had the poster at Hopkins with me and it’s gotten so many comments – even the cleaning people have stopped to look at it. It’s also much easier to put up and take down than my wall of photos I had for my admissions in the fall. In addition to the poster, they decided on a group name (“Karen’s Crusaders”) and designed a t-shirt (front and back pictured) which costs $15 if they order 30 shirts. Let me (or Phillip if you know him) know if you want one or have any questions. I think that’s it for now! Thanks for sticking with me through this update, and continued thanks for all the thoughts, prayers, texts, dinners and more!
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It’s been a crazy two weeks since my last update! I’ll warn you right now: this is a long one. When I last posted, my leukemia level was up to 24%, which meant the plan switched from immune-modulators with limited side effects to re-induction chemo. Before I could start chemo, I needed my t-cells harvested at CHOP (Children’s Hospital of Philadelphia) for the CARt-cell study. Since the study is still a phase 1/2 trial, the insurance needed proof that it has been effective in patients so far. Thanks to my dad, my doctors, and all of the other people working on my case, the approval came through in about a week, which was last Tuesday (July 22). We were all so excited to finally be getting somewhere! The last two weeks have been spent balancing visits to CHOP and Hopkins and all of our summer activities that I’m thankful to feel well enough to participate in! Right after my last update, my family and I went to a family getaway weekend sponsored by the Carol Jean Cancer Foundation/Camp Friendship. None of us were sure what to expect because in previous years it had been a traditional oncology sleepaway camp. However, there were issues with the campsite meeting the special requirements of an oncology camp so plan B was a family weekend at the Hyatt in Cambridge, MD (the giant resort you see when you’re crossing a bridge on the way to Ocean City). It was absolutely beautiful and even though I had my doubts about attending with everything else I have going on, it was an amazing weekend! During the day, the kids would have activities and the parents had free time to go kayaking or to the spa. I was a counselor for 10-12 year old girls and they were perfect! It was nice for the entire family to be around others who understand what we are going through – the patients are definitely not the only ones who need support. It was also great to meet my friends’ parents, who have heard stories about me for years but never met me. In addition, I met a lot of families that I’ve seen around Hopkins but never really knew. It certainly wasn’t a traditional week of camp, but it’s one of those things that you had to be there to understand how special it was. When we left Monday morning, my mom and I went to Hopkins for a quick check-up. My counts looked fine so I wasn’t there for too long. One number was slowly rising, but it wasn’t too concerning. I just need to stay hydrated. On Tuesday, I went to Cool Kids in the morning. While I was there, I got a text and an email that the insurance approved the CAR t-cell study at CHOP! To make my day even better, I picked up my cousin Annabelle at the airport! She hadn’t been to my house in a really long time (8 years maybe?) and we had a nice relaxing week that included a lot of pool time and catching up, plus some cleaning and errands in preparation for the party on Saturday. Facebook and texting can’t compare to spending a few days together and it was a great week. My aunt arrived on Wednesday night and even more family arrived on Thursday and Friday. We cooked and cleaned (my room hasn’t been this organized in a long time) and made a castle cake for my cousin’s birthday on Friday night! On Friday, my dad and I also had to go to CHOP for the day. The t-cell harvesting is a four day procedure. Day 1 included a physical and some lab work, plus a meeting with the interventional radiology people who would be placing a Medcomp line on Day 2. We left our house at 5:00 in the morning, dropped Annabelle off at the airport, and made it to Philadelphia before 8am, which left us just enough time for breakfast at Sabrina’s before my appointment. I took a nap on a couch in the waiting room between appointments because it was such a long day. We got home just in time for dinner and the castle cake. Saturday was the party, and wow, it was a party. I never figured out exactly how many people were here but over the course of the day I’m sure we broke 100 which was pretty impressive considering how last minute it was. I was surrounded by family, family friends, and my friends from middle/high school, college, work and camp. It was unbelievable to have so many people I love in one place all in one day. We had a castle cake contest, me and the newbies vs the experienced cake builders (some have been constructing cakes at my birthday parties since 2000). My team won, though there was a lot of talk that the other team should have won instead. Their cake was very creative and most people thought it should have won, but my team won on presentation/explanation, and both teams had a lot of fun! My cousins also tried to explode a watermelon using rubber bands, which has worked for many people on YouTube but didn’t quite work for us. Speaking of cool things to do with fruits and vegetables, did you know you can make a carrot clarinet? I’ve watched it multiple times now and it still gets me every time. Anyway, back to the party. I certainly didn’t get to talk to everyone as much as I would have liked because that would have taken days but THANK YOU to everyone who came! It was great to see you all and as always we appreciate everything you do for us. Some of us stayed up until after 2am talking; I didn’t want to go to sleep because that meant such a wonderful day would be over. On Sunday, I dropped my friends at their bus/train stops and packed for my few days at CHOP before falling asleep really early because I was so exhausted. We headed to Philly on Monday morning and got stuck in a lot of traffic from an accident/construction but eventually we made it to our appointment. Since I was getting anesthesia, I couldn’t eat after 11pm Sunday night or drink after 9am Monday for my 1pm procedure. It ended up getting delayed 2 hours (hospital time…) and I was absolutely starving. I also had a really mean nurse who was very unsympathetic and just generally not comforting. I don’t like change, and CHOP’s rules regarding the line placement were a little ridiculous to me. I needed to use special wipes on my entire body (specific wipes for specific parts) and I wasn’t allowed to wear my socks or underwear for the surgery, even though they were accessing my neck. I remember wearing my own yoga pants when I got my hickman placed at Hopkins, but I couldn’t even wear my own socks there. The wipes made me itch so I spent the next 2 hours scratching while I waited for surgery. I’m allergic to Tegaderm, which is a kind of dressing that CHOP uses for most lines and I told her about my allergy. She said she’d look it up, and it sounded like if it wasn’t on my allergy list, she was going to ignore it. Good plan…not. The other nurses were very nice but that one just made my tired, hungry, thirsty, itchy self want to cry. When the anesthesiologist came in, he told us he thought he had taken care of me before but we laughed and told him no, this was our first time at CHOP. He asked us if we were from Hopkins, so of course we said yes. Turns out, he took care of me at some point during my first treatment! He thought he recognized my name, and he told me later that once he walked in the room and saw my dad he was positive he’d seen us before. It’s a small world! He was very nice though which was welcome after that nurse. My dad had a really bad migraine and I was sleepy from the anesthesia but eventually we both felt decent enough to go out to dinner. We went to a delicious barbeque place and I made up for the day of not eating before heading over to Drexel. I have to say, it may not be as nice for my family in Philadelphia, but it’s so nice for me to be able to see my school friends while I’m there, instead of them trying to find weekends to come down and visit me. Tuesday was the cell harvesting day! My appointment was at 8:30am, so we were guessing the whole process would be finished by 1 or 2. To keep my cells from clotting in the tubes and the apheresis machine, they gave me heparin and another blood thinner/anti-clot drug. Because of this, they have to wait 4 hours after the end of the cell collection to remove the line. We were hoping to be finished in the early afternoon so there would be time to remove my line that day but no such luck. They didn’t get the machine to start collecting my cells until after1. First, they thought there was a clot in my lines, so they kept flushing them. I could taste the saline for the rest of the day. Since my lines were still too slow for the machine to run, they put TPA in to break up any clots. After that sat for an hour, my lines were working better but then there was a clot somewhere in the machine tubing from when they had briefly started it earlier. They tried repeatedly to flush that out, but the pressure was still too high for the machine and they ended up having to replace all of the tubing. Once they finished that, they tried to hook me up again and my line wasn’t working again. I was starting to panic that the cell harvesting wasn’t going to work but they finally decided to take the dressing off my line so they could move it a little. It turned out that it was probably pressed against my collarbone, which restricted the flow and made the pressures so high that the machine had been shutting down. They propped my line up with a huge stack of gauze and it worked beautifully! When we finally left CHOP around 5:30, I went to hang out with some of my friends from The Triangle before dinner with my dad. We ate on an outside deck with lots of plants, and other than the city skyline, it felt like we weren’t in the city at all because there was no traffic noise and there was so much green. On Wednesday morning, the hotel intercom woke me up with an extremely loud announcement. The power was out, so they were telling everyone that they were aware of the problem and were doing their best to fix it as quickly as possible. They apologize for the inconvenience blah blah blah. Personally, the blaring announcement every half hour starting at 6:30am was more of an inconvenience to my sleeping self than the lack of power, but I guess that wasn’t the case for all the businesspeople staying there. We carried our luggage down to our car from the 15th floor before breakfast so we didn’t need to go back up to get it later. We got to CHOP at 9am, which was early for our 9:30 appointment, and we even went back to a room early, which got our hopes up. Hospital time is killer, though. Our understanding was that they had to take the dressing off, cut the two stitches holding the line in place, and pull it out. I didn’t need any sedation, they would just come into the room and take it out. After sitting there for a little while, they told us they needed to do bloodwork to make sure my platelets were high enough to take a line out of my neck because that’s a pretty bad place to bleed from. They did bloodwork after my cell harvesting less than 18 hours before but apparently that wasn’t good enough. Platelets get stuck in the machine that all my blood went through, so I only had about half as many as I did before the cell harvesting, which is expected. Did they use my line, which wouldn’t have required a needle? Nope, they put an IV in my arm. Good thing my platelets were high enough that I wasn’t bleeding uncontrollably! The results took about an hour to come back. Taking the line out took 10 minutes, five of which were spent applying pressure to the site after the line was removed. We thought we were free to go but once again, nope! There’s yet another step we didn’t know about – I needed a chest xray to make sure the line removal didn’t affect my port line, which was in the same vein. They took the xray, then waited for someone to read it. Luckily it looked fine. I’m not sure what they would have done otherwise, since they couldn’t give me anesthesia with all the food I’d had that morning. We finally left at 1, after a lot more than the 10 minute removal. It was a bit frustrating that we didn’t know about all of those steps beforehand. It seems like they’re pretty standard, so it would have been nice to go in not expecting to leave within an hour or two. If we knew it would be 4 hours, we probably would have taken a lot more in with us to occupy our time. I’m not a big fan of change, and I’m so used to Hopkins that I didn’t like CHOP as much as I expected to. My social worker there was very helpful and didn’t ask me annoying questions like how am I feeling/what am I thinking so she’s a big plus. Most of their staff was nice, except for that one nurse on Monday. Their internet blocks the randomest things – instagram, buzzfeed, etc. but facebook and twitter work just fine, which I found surprising because I see a lot more questionable stuff on facebook than instagram. The “access denied” page lists humor/jokes as a reason to block a page. Apparently they don’t believe in laughter is the best medicine there! Their hospital time is way slower than Hopkins hospital time, at least in my few days of experience. I don’t remember ever waiting 2 hours for a surgery before and I certainly was allowed to keep my underwear on (especially when I’d only been wearing them for the three hours since my shower that morning). Their security desk scans each person’s ID and prints them a visitor badge. As you can imagine, this takes significantly longer than giving each person a visitor bracelet. Their parking garage is one of the most strangely laid out garages I’ve ever been in. It’s a lot to get used to so I’m sure it’ll grow on me but for now I’m thankful that my cells have been harvested to help me beat this cancer for good, and meanwhile I’ve been back home enjoying the rest of my week! Yesterday, I went to the dentist, drove to Annapolis to visit my best friend and go kayaking on the river behind her house, and went out to dinner with two of my favorite people. I also went to a viewing for a friend of mine, who passed away during the party on Saturday while I was in a group with a few of my close camp friends making a castle cake. Looking back, this is perfect in a way because I originally knew him from camp and he loved to celebrate. I’m positive that he would have been all for having a party just to say thank you and making not one but two cakes just because! I went to camp with him for years but didn’t really get to know him or his family until we were both dealing with relapses last fall. Our families had a super bowl party in February when we were both stuck in Baltimore at St. Casimir. I made him a countdown chain for his transplant and I was amazed by the amount of love in those messages and the number of people who submitted notes who had never actually met him but heard his story. In 18 years, he touched so many lives of people that he will never meet, and he truly did live his life to the fullest. Like someone said at the service today, you shouldn’t have to know that you’re dying to start living. Pray more, worry less, live and love freer. Dale, even though I didn’t know you well for very long, those are a few months that I will never forget. Thank you for the camp shirt in the right size, I felt a little under dressed yesterday but I knew there was nothing else I could wear that was more you than your shirt. You’re the only person I know who would think to request steak at your funeral, and I’m glad Outback came through for their most dedicated customer. Rest in peace and, when you get a chance, look for my friend Amanda. Today, my mom made sure my appointment at Hopkins was after the funeral. I needed bloodwork to make sure that my counts still look okay so that I can go to Camp Sunrise. Luckily, everything looked good so I’ll be heading to camp tomorrow morning! There are still no leukemia cells in my blood, and all of my other counts are normal so my bone marrow is still producing enough good cells. We were surprised about this, considering how fast the number jumped from 1.8 to 24%, but my doctor said that the GNKG168 stuff may be helping. We never did any more bone marrow tests after the 24% one a few weeks ago so we don’t really know, but immune-modulators can take some time to work, so it’s possible that the GNKG168 helped some after I stopped taking it and it had time to rev up my immune system. There really isn’t any way to know what exactly is going on, but the point is, all of my bad cells are still confined to my bone marrow and I’m still feeling great! The current plan is for me to attend camp this week and then be admitted to the hospital the following week to start chemo. I signed all the paperwork for the chemo today. It never gets any easier to agree to all of these drugs that have “rare but serious” side effects ranging from coma to blindness to major organ issues. The alternatives (let my leukemia take over or try lots of other experimental therapies) aren’t any better. Luckily, the common side effects look mild comparatively – tiredness, low counts, nausea, etc. Even faced with all this chemo, I’m most dreading Prednisone, which is a steroid. When I had it during my first treatment, my face got all puffy and I woke up at 3am every night absolutely starving. However, steroids can do a lot against leukemia apparently so I’ll take it. What comes after this month? When people ask me that I just laugh and tell them I wish I could answer that. It all depends on how effective this upcoming month of chemo is and when CHOP can give me my t-cells back. This may be my longest update ever but that’s finally about it for tonight! Now that the insurance has approved the CHOP study, we are starting to deal with Drexel. I’m trying to sign up for online classes so we’ll see how it goes! As far as co-op, I’ve been doing as much work for Cool Kids as I can, even when I can’t be in the office so hopefully I can still get credit. I’ll cross that bridge when I get to it. In the meantime, I’m all packed for camp and ready for a great week Under the Sea! I hope you all continue to enjoy your summer as well! If you happen to be in the Columbia, Towson, or White Marsh malls in the next two weeks, check out the Houses of Hope exhibits! My new splatter paint house is in Columbia but a house I made a few years ago is in White Marsh this year. There are a lot of amazing kids represented at every mall; their bios are definitely worth reading! Thank you for all the thoughts and prayers, and I’m sorry it took me two weeks to update you! If you've made it all the way to the end of this update you can tell I’ve been a little busy. |
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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