I’ve always loved Dove chocolate because of the fun messages on the wrappers. If you’ve ever eaten multiple chocolates from the same bag, you’ve probably noticed that the messages usually repeat. A few weeks ago, I opened one that said “Because you can.” I tried to flatten it out and save it like I do with all of my favorites, but it ripped right through the message. I spent the next few weeks hoping to find another one in the bag. I got down to two chocolates and it seemed like it wasn’t going to happen but on the last one, there it was again! Anyway, I knew instantly that would be the title of my next blog post, and I’m finally getting around to writing it. It’s going to be a long one because, once again, I fell into the trap of waiting for answers to my questions before updating everyone. I’ll learn my lesson one of these days. I posted my last update as soon as I had my six-month post-transplant bone marrow test results, which were clear. I was obviously thrilled with the good news, but within 24 hours of my good news post, my doctor called me. “We’re really happy with your test results, but…” He explained that it’s great that I’m still in remission but they want to make sure I stay there. They had a few options in mind and wanted to set up a time to discuss them. Although I understood what he was saying, I was so sad and frustrated that I cried as soon as I hung up. Can’t I just enjoy some good news for a few days without a “but” after it?! We set up a meeting for the following Tuesday, but we switched to a phone call instead due to the snow storm. All winter, I said that if we were going to get a snow storm, it needed to be after I got off my crutches. I got my wish, but we didn’t get nearly as much snow as predicted and it wasn’t good for skiing. We did go sledding though! Anyway, the phone call was not particularly surprising. I still haven’t had much graft vs. host disease or any other signs of a big immune response since my transplant. Although it’s generally good not to have too much, part of the reasons transplants work is that the donor cells seek out any residual disease, which can cause side effects. My doctors are worried that, since I haven’t had those side effects, I’m at a higher risk for relapse. They recommended a donor lymphocyte infusion, where they would give me some lymphocytes from my brother in a very low dose. This would hopefully stir up an immune response to kill any residual disease with fewer side effects than the full dose they would use if I had disease. The plan was to set up the cell harvest during my brother’s spring break the following week and I’d get the infusion before I headed back to campus at the beginning of April. My doctors seemed a little bit offended when we actually laughed out loud when they told us they were going to be efficient about this plan, but sure enough, our laughter was justified. As my brother’s spring break began with no word of an appointment, I became increasingly frustrated. We finally found out that adult oncology needed to approve the procedure (for reasons unknown to me), and they refused to approve it. They said it was too risky given that I didn’t have any active disease, even though I was at high risk for a relapse. I was so upset. Back in the fall, my doctors told me a strong immune response with this transplant was my best hope for a cure. Although I hated the idea of additional treatment while I was in remission, I completely bought in to the necessity of a low-dose donor lymphocyte infusion on that snowy Tuesday morning. Now they were telling me never mind, we’re not going to do anything right now?! But you just convinced me I needed to do something! And now I had given up the possibility of any spring break plans because I was expecting that week to be full of appointments. As usual, I used my frustration to focus on finishing my six classes and ended up with another 4.0. I spent a lot of spring break working on camp stuff and I was interviewed for a video for the Hebda Foundation gala. The Hebda Foundation donates a lot of money to Hopkins and camp and I was thrilled to find out the gala raised over $50,000! As I got ready to come back to school, I noticed I was getting tension headaches whenever I went to the grocery store. I couldn’t figure out why until I went for a walk one day and realized the walking was the problem. After six weeks on crutches, my back wasn’t used to holding me up straight, so I started going for walks every day to prepare to go back to school. It got better quickly, though I was pretty miserable after my first day of classes until my friend Alyse saved the day with a back rub. I moved back to Drexel on April 2nd, just in time for the start of our spring quarter. Being back in the city was such a huge adjustment at first. I went to brunch on my first full day back and probably saw more people walking around Old City in half an hour than I’ve seen in months. My first week of classes was also really overwhelming because we only have a one-week add/drop period and I changed my classes around quite a bit. I also had to get approval to finish my degree in the fall but walk in June’s graduation ceremony. I got a nice lecture from the graduate studies office about how BS/MS is an accelerated program and extensions aren’t usually granted, had I considered getting my masters later, before I was given the chance to briefly explain my situation. It turned out okay, but those few minutes when I thought I wasn’t going to get my degrees after all my hard work to keep up were devastating. Although I had pretty much given up on graduating from the honors program due to all my time off, I was able to work a class into my schedule this term to make that possible. I’m taking some other cool classes, including one on infographics and one on occupational and environmental cancer. I’m also taking an editing class and have been working with two PhD candidates to edit their dissertations. Overall, the transition back was easier than I expected. It helped a lot that I had more close friends to come back to this time, so I was busy immediately. I’ve also been reading a lot, especially when I’m anxious or stressed. It helps me recharge and I’ve found I’m actually much more focused and productive if I take occasional breaks between assignments to read. I barely read at all last year, so I set a goal of 15 books in 2017. I’m already on my 14th, and they haven’t all been short – I managed to finish The Emperor of all Maladies in less than three weeks! If you have any recommendations, send them my way. After I was back at Drexel for a few weeks, I got a call from one of the nurses at Hopkins. She told me about a new trial that my doctors are recommending in place of the donor lymphocyte infusion. It’s called RESOLVE (Research of Expanded multi-antigen Specifically Oriented Lymphocytes for the treatment of VEry high risk hematopoietic malignancies) but it’s so new that I don’t think the results have been published in a journal yet. Also, the first few people who received the therapy had disease, but I qualify due to my very high-risk patients even though I’m in remission. The study is actually somewhat similar to the previous plan, except that when they harvest the lymphocytes from my brother, they’ll pick out specific ones that are more likely to attack the disease and less likely to attack me – ideally, the same anti-residual disease effect with fewer unwanted side effects. My two biggest concerns about this trial were how it affects my summer road trip plans and camp. Luckily, the timing of the harvest and the time they need to grow the cells work out pretty perfectly. I’m not sure if I’ll still be able to have my second knee surgery in August because the study team doesn’t want to mix the cells and the extra inflammation from surgery. If anyone is more curious about the science behind it, here’s the one article I found. A few Mondays ago, I went to PT after class and felt completely drained walking home. I had done some new exercises, but it was still very strange. I called in to a camp meeting later that night and when it ended (before 9), I was so ready for bed. Sometimes my body takes a while to cool down, but I realized I still felt very hot even though I’d been home for hours. I checked my temperature and realized I had a fever. At Hopkins, I’m supposed to call the fellow on call for any fever 100.4 or higher and since I still have my port, I’d go to the emergency room immediately. I know CHOP’s rules are more lenient, but I called them just to make sure. They don’t bring people in until they’ve had three fevers of 100.4 or greater in 24 hours (at least an hour apart), or one fever 101.3 or greater. I checked every hour, but my fever disappeared after two so I didn’t need to go in. The next day was very busy and luckily, I felt fine. On Wednesday, I went to PT again and a few hours later I felt awful again. This time, I got to three strikes and went to the ER. My friend Maddy came with me which was nice because I’ve never been to the ER alone. My fever was gone by the time I arrived (apparently I should have spaced out my checks more than an hour), but they still drew labs/cultures and gave me antibiotics before sending me home. I felt fine for the rest of the week until Sunday night, when I had a fever high enough to go in after one strike. Maddy came with me again, this time prepared with snacks and proudly able to recite my allergies, port needle size, and favorite dressing. Our friend Alyse also came to hang out, and the doctors were quite entertained by our conversations compared to the usual patients in a children’s hospital. My hemoglobin was low and that was my second time in the ER in a few days, so they decided to keep me overnight which wasn’t particularly surprising. I was very worried about the low hemoglobin because that was my biggest symptom when I relapsed in 2013. We went up to the oncology floor where we discovered my nurse was a Drexel grad and my friend’s roommate! I told Maddy I would be fine overnight but she sensed my lack of confidence (especially with the hemoglobin issue) and is the greatest human ever and spent the night with me. My parents have worked really hard to make sure I’ve never spent the night in the hospital alone and I really appreciated the support even though I’m an adult and could probably handle it. It’s always nice to have a voice of reason when I’m worried. I had an appointment in clinic later that week and was pleasantly surprised that my hemoglobin was almost back to normal. Since then, I’ve been feeling great and only had a few occasional fevers that never got to three strikes. On Friday night, I was making dinner and had a headache, which has been accompanying these fevers. Sure enough, I had a fever high enough to call immediately (though I will admit I finished making dinner first because I was starving). This time, I went to the ER by myself though two friends came by to visit while I was there. Like before, they did labs/cultures and antibiotics then sent me home. These fevers have been frustrating, especially because they were worst during midterms. I got behind on my projects, was nervous and overwhelmed, and I even cried while meeting with a professor (but he was extremely understanding). I have no idea what days I’ll get them, but they’re always around the same time in the evening and disappear in a few hours unmedicated. They remind me of a fever I kept getting after one of my CART treatments, but those cells should be long gone from my body. Everyone is guessing it’s a virus but of course anything out of the ordinary makes me worry it’s much worse. However, my counts have been pretty stable and I’ve had plenty of energy and appetite, so I’ve been trying my best to focus on the simple explanation of a virus. Even with all the medical uncertainty and an at times overwhelming 18-credit BS/MS course load, these last two months have been some of my most fun at Drexel, and that’s where the title of this post comes in. I’ve been so thankful to have the friends and the energy to pack so much into the past seven weeks. I’ve caught up with friends have haven’t seen in months or years. I’ve eaten lots of tacos and ice cream (thanks Insomnia) and had Sunday brunch almost every week. I taught my friend how to dye Easter eggs, and spent a few Tuesday nights in trivia contests with my friends at local bars. I got my first non-shave haircut in years. I participated in the NEDA walk and attended the regional conference for the Children’s Oncology Camping Association. I’ve gotten to know some of the professors I’ve only ever worked with remotely. I learned some great new board games and that I’m not very good at disc golf, but there’s hope. I’ve gone to physical therapy twice a week and gotten much stronger. I’ve called in to camp meetings and am really looking forward to Sibs next weekend and Sunrise in August, which my brother will hopefully be attending for the first time! I’m also really proud to say that I finally updated my blog site and published my Resources page thanks to lots of input from my friends, their families, and even people I’ve never met but “know” through online support groups. I’m so appreciative of everyone who played a part. I have an appointment at Hopkins on Friday morning where I will hopefully get more information about the RESOLVE trial plan. I’ll write another post when I know more but I didn’t want to put this off any longer. For now, I’m focusing on enjoying the last few weeks with my friends before they graduate. I’ll be walking in the ceremony (June 12th!) even though I will not officially finish until the fall after my road trip. Thank you all for making it to the end of this ridiculously long post and for your continued love, prayers and support. I would be nowhere without you!
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February flew by, but I finally have update-worthy news and I’m sharing it in a timelier manner than usual! It’s almost finals week, and blogging is way more fun than most of my to-do list. February wasn’t too eventful medically. I had an orthopedic appointment a few weeks after the core decompression surgery on my knee, and my doctor was shocked that I hadn’t cheated and put weight on my right leg. I was surprised to learn that most teen/young adult patients are too impatient to wait six weeks and ignore the risk of fracturing their bones. I sort of understood, because as you’ve probably noticed, I tend to bend the oncology rules and keep my life as normal as possible. After being at multiple hospitals, I’ve figured out that everyone has a different opinion on most of the rules and there are lots of gray areas. However, weight bearing and non-weight bearing seemed pretty black and white to me so crutches were really limiting. My rule-following paid off though, because my surgeon was impressed by my range of motion and lack of pain. He decided I didn’t need to go back for the standard six-week checkup and could instead wait until 12 weeks (the end of this month). It takes up to six months to be able to tell if the surgery worked, so I won’t know until I get an MRI this summer. Life got a little bit easier as I got stronger and more comfortable on the crutches, which also happened to be about halfway through the six weeks. At that point, thinking about the time I had left on the crutches was increasingly bearable. At 5.5 weeks, my family was going to be away for the day and I wasn’t sure how I was going to carry my food to the table. My surgeon said that the six-week mark was somewhat arbitrary so I could start weaning off the crutches around 5 weeks. At that point, it’s not the standing weight that would be a problem, it would be if I twisted it, so I just had to be careful. I started putting my right foot down with a little weight when I walked, and the nerves on the bottom of my foot were so overstimulated – I could feel every little bubble in the carpet. I slowly worked up to only using one crutch, and finally walking without them for part of the day. Friday was my first day completely crutch-free. Overall, the six weeks went by faster than I expected, but only because I have very helpful friends and family! I plan to have my left knee done in August, and I think that will be less obnoxious because I’ll be able to drive myself places. I’ll also be able to go outside and sit by the pool instead of being stuck inside the whole time. Even more important than my orthopedic appointment was my six-month post-transplant bone marrow test. I have been panicking about this test for weeks now (but a huge thanks to my friends for keeping me sane). I still haven’t really had any of the graft vs. host disease that I was told in August was my best hope for a cure, so that’s a bit terrifying, and I relapsed six months after my first transplant, which didn’t help the nerves. On Sunday, after having lunch with some friends, I noticed a voicemail from my doctor. I knew it was the results, and I briefly debated whether I wanted to know before or after my drive home. Luckily, sitting there in a parking garage, I heard the words “good news” and I don’t think I stopped smiling for the rest of the day. I’m six months cancer-free (thanks Matt!!), and don’t have my next bone marrow test for another six months! I can finally make real plans! Obviously, this news was a bigger relief than I can put into words. I had begun planning the rest of my year, but it was hard to get too excited about any of it until I had these test results. I’ll finally go back to school for spring quarter (April-June). Oddly enough, the classes I need are mostly being offered online, so even though I’ll have 18 credits, I will only have class Mondays and the occasional Friday. Even so, I’ll be back in Philadelphia and couldn’t be more excited to see everyone. My schedule is pretty flexible, so come visit! I was originally expecting to graduate in June, but four relapses later, I will need one more term to finish my BS/MS program. I’ll be taking summer off to go on a cross-country road trip with my friend Jenn, and finishing up my classes in the fall. Drexel only has June graduation ceremonies, so I’ll be walking early (June 13) with my friends instead of going back to walk late next June. Even though I won’t be quite finished, I can’t even tell you how many times in the past few years I’ve wondered if I’d ever get to graduate so it’s pretty exciting that I’ll actually be there in 98 days. I had a cardiology appointment to check on my heart strain. It looks better after two months on medication, and my doctor expects it to continue to improve. She increased my dose because I was tolerating the low dose, but the medication lowers my blood pressure. After a few days of the higher dose, I’ve been feeling a bit lightheaded so I’m going to ease up to it instead. I also had an enlarged aortic root, which is calculated based on body surface area. I think it was normal before all of my relapses, but then I lost weight. As I gain some weight back, it is less enlarged for my body surface area, even though the size hasn’t changed. So that’s good I guess? I’ve been staying really busy as usual. I’ve met up with some of my friends and gone to a lot of camp planning meetings. I gave up my newsletter position at Camp Sunrise in order to step up as co-LIT (leadership in training) director with my friend Casey, which I’m both excited and nervous about. I’ve gone to a lot of Susie’s soccer and basketball games and done a lot of homework. Thank you to everyone who drove me around and carried things for me while I was on crutches! This past weekend was more exciting because I was finally crutch-free! Jenn was home for the weekend and we saw Seussical at Glenelg (nice job James!). Matt also came home and the two of us went to a wedding on Saturday. It was a beautiful celebration of two amazing people, and it was fun to see so many people from camp, past and present. Sunday was our camp reunion, which was at a roller skating place. I wasn’t originally planning to roller skate, but then I changed my mind…and who is really surprised that I went roller skating on my third day crutch-free? It was exhausting for my right leg but definitely worth it, and I didn’t fall at all (…thanks to a wonderful catch by my friend David the one time I really lost my balance). I could barely walk that night, but I was fine by the next morning. The kittens are doing well and continue to be a great source of entertainment. One day, I knocked a crutch over onto Clyde, who somehow got stuck in it. Terrified, he ran into another room, still stuck in the crutch, while I sat helplessly on the couch, unable to get up and help with only one crutch. Luckily, my mom was here to help him out. He and Sam are so sweet together – Sam was stuck in the bathroom one day and Clyde pushed the door open to let her out. Thank you all for your thoughts, prayers, and encouragement over the last few weeks. I’m so excited I finally had a great news update! At this point, my appointments are only about once a month, so if you don’t hear from me, no news is good news. My next bone marrow test won’t be until August. Keep donating blood and encouraging people to join the bone marrow registry! Also, if you have time, I have one more favor to ask. I’m working on adding a resources page to my blog for patients and their family/friends and I need your help. If you or a close family member or friend had cancer, I'd love your input! It would make this project much more valuable because everyone’s experience is so unique. Thank you, love you all! It’s been a while since I posted an update, but apparently today is World Cancer Day and I’ve been promising updates for weeks. I thought this was going to be a pretty short update, but you know that rarely actually happens. When I last posted, I was waiting for the results of my skin biopsy from the rash on my chest, which we were hoping was some graft vs. host disease. Unfortunately, it came back inconclusive. It may have been mild GvH, but it wasn’t enough for them to officially diagnose. They thought maybe I was allergic to something, so I took my necklace off for a few weeks even though I was fairly certain that wasn’t the problem because I’ve worn it for years. Sure enough, I was still itchy. Although I’ve never had any symptoms of gut GvH, the doctors insisted on doing a lip biopsy. OUCH. I was so glad I refused it right before Thanksgiving, because it was a while before I was eating comfortably again. I turned down tacos one night because I knew they’d be miserably painful to eat. When I turn down tacos, you know it’s bad. A few weeks earlier, I had been told that my Hickman line could come out as soon as my bone marrow came back clear at the end of November. I was thrilled when I got my test results, and I asked again about the line. The team wanted to wait for the lip biopsy results. At that point, we got extremely frustrated. There’s one doctor we don’t see very often, and at our next visit she was the unfortunate one seeing me the day. We came in with a long list of questions and may have ended up crying (hard to believe, I know…). Basically, I was tired of the criteria changing and had no idea how the lip biopsy affected my Hickman removal. If the biopsy is negative, would the Hickman come out? What if it’s positive? How does this change anything?! What do you really expect to find in this biopsy anyway? Oh, and by the way, you want some inflammation, but I can’t have my knee surgery because it will cause inflammation? Huh? As we expected, she didn’t really have all the answers but promised to nag until she did. In the end, we got a good laugh because she told us we normally seem very composed. I’m pretty sure nobody else in there would call us composed – they’re very used to us crying easily by this point. Surprise, surprise, the lip biopsy was negative. The team finally agreed that moving forward with the core decompression knee surgery was a good idea, hoping it would cause some inflammation and stimulate some GvH. Due to osteonecrosis from all the steroids, the bones in my knees are dead and starting to collapse. Core decompression surgery involves drilling tiny holes into the dead parts of the bone and packing them with stem cells, hoping that this will bring the necessary blood flow and oxygen back to the area. The team also agreed that my Hickman could finally come out, but it might as well be combined with the knee surgery to limit my trips to the operating room. I thought Hickmans could come out at the bedside, but my doctor said no. I should’ve pressed the issue because it turns out he was wrong. It took a while to schedule the surgery, but I felt much better knowing there was a plan. I was disappointed that I couldn’t fit both knee surgeries before spring quarter starts in April, but it will be good to have some time in between to build up my strength and see how the first one is working. Besides all that, December was pretty good. Although the occasion was sad, it was amazing to have the whole family together for my uncle’s celebration of life, and having hundreds of people attend was such a testament to how many lives he touched. In one of my earlier updates, I posted pictures of the kittens at his house. Matt and I decided to surprise our mom with one of the kittens, and we chose the one my aunt said seemed to have inherited some of Uncle Dave’s personality (which is true, she had us on the floor laughing her first night here). Mom and I had a hypothetical conversation about what we’d name a kitten, and she mentioned always having a calico cat named Sam growing up. We brought our own Sam home that Sunday night, and surprised Mom when she came home the next day with my grandma. My grandma stayed for a few weeks after that, enjoying a break from Maine winter! We got a huge Christmas tree, as usual. It was great to see family for Christmas and I was so excited when my friends came home for break. Now that so many of them are out in the real world, some of them were only here between Christmas and New Years but we made the most of it. We hiked, made cookies, drove around looking at Christmas lights, ate lots of food, rang in the new year, and went ice skating. I also went to a Baltimore Blast practice with Cool Kids Campaign. I’m not very good at soccer, but we played volleyball for a while and that was much better (though I could barely move later that day). I also went to my first Baltimore Blast game which was a lot of fun! We went on our annual ski trip the weekend before my surgery. There wasn’t actually enough snow to cross-country ski, so we didn’t even take our skis. Instead, we went to the Corning Museum of Glass, which I highly recommend! There was a ton of stuff to see, including glass from ancient Egypt, or you could spend most of the day watching live demonstrations (such as the glass rooster that took about 10 minutes over an open flame). We also went hiking and saw bear tracks. Luckily, we didn’t see the bear. To celebrate my last day crutch-free, I went hiking in Harpers Ferry and drove to a camp meeting – my last driving for six weeks. My surgery was scheduled for January 19, and I met with orthopedics the week before. I was expecting to do my left knee first because it looked worse in the x-rays, but after looking at the MRIs he said they were both equally bad and I could choose. I ended up picking my right knee less than 12 hours before surgery because I can’t drive with that one. This way, my second surgery won’t be as restricting. Also, my left leg was stronger so I figured it would be better able to handle all the hopping around on crutches. The surgery went well, and my Hickman is out! I still have my port so I don’t need to get stuck in the arm for labs. When I met with the team taking my line out, they mentioned that this is frequently a bedside procedure, they schedule the appointments as consults because it’s so quick. I was pretty irritated that it could’ve been done earlier, but oh well. Even though I have to sit in the shower at the moment, it’s still so amazing to actually be under the water instead of trying to keep my line dry. It’s crazy how appreciative you are after six months without a normal shower! Even after the surgery, I don’t have any major GvH. My incisions are healing really well though, so at least that part of my immune system is working well! I was itchy again for about a week but my rash has disappeared. If it was GvH, it wasn’t anything near as significant as they originally hoped for. At this point, we aren’t looking for acute GvH anymore, we are looking for chronic. What does that look like? It can look like anything. Dry mouth, joint issues, swelling, fatigue, and who knows what else. I don’t think I’ve had much, but I’m hoping that the little bits I might have had were enough to kill any residual leukemia. Overall, I feel great. My hair is growing quickly, as usual, though I’m still not sure how to describe the color. I’m getting much better with the crutches as my arms get stronger, but I’m still counting down til I’m finished with them. I really don’t like being so dependent, but my family and friends have been very helpful. My next appointment is in a month, and I’ll have my six-month bone marrow aspirate. I’m only a little nervous… I’ve been staying busy with classes. I’m taking 18 credits, three undergrad courses and three grad courses. It’s a lot, but I can’t do much else on crutches anyway! After six months off, it was a little overwhelming at first but I’m so happy to have productive things to do again. I should be graduating in June, but after taking time off last year for my transplant, I need one extra quarter and will graduate in December (if all goes according to plan). I’m hoping to go back to school for spring term (April – June), then travel and enjoy some of my summer before having my other knee surgery. Planning this far ahead hasn’t gone well for me in the past few years, but I’m really hoping that’s finally behind us. A few weeks ago, I was invited to speak at the groundbreaking event for the Ulman Cancer Fund House in Baltimore. After my first transplant, I stayed in pediatric housing, but this house will be specifically for young adults. I’m really excited that future patients will have this option and it was fun to be a part of the event. Plus, I now have a hard hat and a hammer! The event made the news, if you want to check it out. Thank you for your continued love and support! Keep your fingers crossed for good test results next month! And if you have any must-see spots or hikes for a cross-country road trip, send them my way! I hope everyone had a great Thanksgiving! The past few weeks have been pretty busy with appointments, but I didn’t have any particularly noteworthy news until this weekend when I got my day 90 test results. I had a day full of appointments recently, starting with immunology. The transplant prep killed any remaining modified CAR-T cells, which were killing my B cells. With healthy B cells, I can finally make my own antibodies again, but my new immune system is only a few months old. Oncology wanted me to stop my antibody infusions for a month, see if my levels dropped too much, and if not, stop the infusions. My prescription was running out so immunology wanted to see me and they said absolutely do not stop the infusions now or any time until flu season is over. In the spring, we can re-evaluate. Hopkins has been talking about starting a CAR-T cell trial, and I really hope oncology and immunology learn to work together for those patients. In my experience, they rarely agree and oncology doesn’t know much about the subcutaneous infusions or why anyone would want to do them instead of monthly IV antibodies in clinic. I’m in a Facebook group with about 100 families in pediatric T-cell trials and most people have happily switched to subcutaneous infusions. After immunology, I went to cardiology because a recent EKG had looked potentially concerning. These depend so much on who is doing them and where they place the leeds, so when cardiology repeated it, everything looked normal again. My right ventricular strain has been on the lower side of normal, and my ECHO that day showed it was a little bit worse and my aortic root is slightly enlarged (though I think I saw a cardiologist for that a few years ago and he said “why are you here?” because it was so minor). These issues are likely caused by chemo I had years ago, either when I was 10 or when I first relapsed in 2013. The tests depend so much on who is doing them because a slightly different click can cause very different calculations, so nothing is too concerning yet and we will continue to follow everything. I’m now on a blood pressure pill which helps one of those issues, even though it was not caused by my blood pressure. I have low blood pressure without the pill, usually 90s/60s or lower, so I eased on to it so I don’t get dizzy every time I stand up. My day 90 bone marrow biopsy and spinal tap were last Tuesday. I’m always nervous as these tests approach, especially because I’ve been a bit tired recently, but the excitement for Thanksgiving was a nice distraction and I think my tiredness is mostly boredom. I’ve finally had a few symptoms of potential graft vs. host disease, which we’ve been hoping for. My eyes have been itchy for almost three weeks now and I’ve had a rash on my chest and my chin. It’s not as much as the team was expecting/hoping for but fingers crossed it’s enough. I got less Versed for my procedure this time, so I was sleepy and don’t remember much, but I wasn’t knocked out until 7pm like last time. After my procedure, I had a skin biopsy of my chest where my rash is. I was asleep for this discussion, but I think they use the biopsy to look for inflammation to determine whether it’s skin GVH. At the time, all I felt was the prick of the numbing stuff, but when that wore off hours later, it hurt more than my hip. The skin biopsy, from what I remember in my Versed haze, is kinda like taking a mini melon baller to get a chunk of skin and then stitching the hole back up. My siblings did not appreciate that description, but it’s all I’ve got. My rash is still itchy but it’s tough to scratch with the stitch in the middle so I can’t wait to get that out tomorrow! There was talk of a lip biopsy to check for gut GVH but I refused that one right before Thanksgiving. I’m not sure if I’ll get it this week. I also had an eye exam that day to see why my eyes have been itchy. I really hate having my eyes touched, so although this post-procedure scheduling was a bit concerning at first, I decided maybe it would be better if I was sedated. The eye clinic is across the hospital, but typical me refused a wheelchair. I wanted to walk, but I was still sleepy and the hospital was bright so I asked my mom if I could close my eyes and hold on to her. Even in my daze, I still wanted to pass the slow walkers in front of us. I thought our wait was pretty quick, but apparently I just slept through our waiting room time. During my exam, I read the letters on the chart perfectly (with my glasses), but when he was trying to look in my eyes, I was not a fan of the lights. I kept pulling my head back until he asked my mom to hold my head in place. Oops. He said my eyes are dry (potential chronic GVH), which can feel dry, painful, or itchy. Mine just feel itchy, and eye drops have been helping. We asked that the results from my bone marrow biopsy wait until after Thanksgiving. I usually want to know ASAP, but we didn’t want any possibility of bad news clouding the holiday. Plus, it was nice not to be anxiously awaiting a call. We finally got the good news on Saturday that I’m still MRD negative/in remission! Yippee! I’m hoping this means my Hickman can come out soon, because I’m so tired of struggling to keep it dry while I shower and my skin could really use a break from the dressing. My mom is tired of flushing it every day, though I taught one of my friends when my mom wasn’t home! I still have my port for access, so I shouldn’t need the Hickman anymore. My next bone marrow biopsy is in February, which is a long time to wait after the monthly reassurance I’ve been getting, but I’m REALLY hoping that my current itchiness is enough GVH to get rid of the leukemia for good. Our family Thanksgiving was in PA this year, outside my 100 day radius. We used to have huge, 40+ person dinners but they’ve gotten smaller as everyone has gotten busier. This year was a pretty big year and it was amazing to see everyone after being stuck in Maryland for so long. My 48 hours in PA were filled with food, family, love, fun snapchat filters, and kittens and it was just the break I needed. We sort of asked permission to leave my 1 hour radius early for Thanksgiving and my team said it was fine. However, it’s unclear whether they really thought it was a good idea or if they just knew we were going to go anyway, and asking permission was more of a formality in case something happened and they got a call from another hospital. I drove the entire 4+ hours (including traffic, it wasn’t that far!) because I was so excited and relieved. Whether I had permission or not, I don’t think I’ve ever been happier with a decision. My uncle was battling a rare liposarcoma and I thought my July visit would be my last. My mom visited frequently throughout the fall and it was so frustrating that I couldn’t join her. Luckily, I was able to visit on Friday before he passed on Sunday. Sometimes rules are meant to be broken. The title of this post is for him: “Each day is a gift – make every day ridiculously amazing.” I’m sure nobody is surprised that I’ve done a few other things on the not recommended list recently. We took advantage of some of the really nice weather and went hiking at Great Falls National Park. It was technically within my radius (59 minutes!), but that time didn’t include traffic or the hike. I was nominated for an Unsung Hero award for my work with Cool Kids Campaign, and I went to the luncheon awards ceremony (with hundreds of people) on National Philanthropy Day November 9th. It was somewhat entertaining when people kept asking me what I did. A lot of the people who won other awards donated a lot of money or did one big project, but I’ve done lots of much smaller projects like designing shirts and banners or editing articles and books. I know these are important, but to me they’re just fun ways to help an organization that has helped me. I went to another large event about a week later, this time a camp fundraiser where I gave a speech about how camp has changed my life. I promised so many people I would make sure someone recorded it, but I was so nervous that I completely forgot. I got a standing ovation which was amazing and I managed to hold back my tears until I was no longer standing in front of 500 people. It was a great event, and thank you to the Youngs for raising so much money for camp! My hair is growing, and finally looks more brown than blond, though it depends a lot on the light. My knees have been better, but my right knee has been hurting for the last week. I finally had the right MRI, but I haven’t heard the results yet. They don’t matter too much because oncology won’t let me have the surgery yet. I’ll keep bothering them about that and about getting my Hickman out. I’ve been staying fairly busy with books, puzzles, camp stuff, and PT until my online classes start in January. In the past few days, we’ve been going through photo albums looking for pictures of Uncle David and they have brought back a lot of great memories. It was amazing to see some of my friends while they were home for Thanksgiving, and I’m really looking forward to Christmas. The holidays felt so rushed last year because I was at NIH until December 22nd, found out my tests were good December 31st, and went back to school January 3rd. This year, I’m trying to see as many lights as possible and spend more than a week at home with our tree.
Thanks, as always, for all your love and support! Also, thank you to everyone who was part of the meal train, and a special shoutout to the Lyons family for ending it with the most memorable meal of all – a taco feast! Please, please, please get your flu shots, if you haven’t already, to help protect those of us who can’t. I’m okay with a cold to rev up my immune system a little, but I had the flu at school two years ago and it was miserable. I’ll keep you updated but at this point, things have calmed down enough that no news is probably good news. Love you all and enjoy the holidays! I started writing a short update a week ago because I wanted to share my test results, but each appointment brought more news and now it’s a bit longer. There’s good news, but there’s still a long road ahead. I stopped my overnight fluids last Saturday night, and my body had some trouble adjusting. I’ve always been extremely fluid sensitive, getting migraines or dizziness even when I’ve had what most people consider a crazy amount to drink. I woke up Monday morning with a slight headache, but each morning was better as my body got used to no overnight fluids for the first time in weeks. I’m still drinking at least 2.5 liters a day (I was getting at least 3 between drinking and IV before) which is a lot! My app is extremely helpful because it reminds me every hour to get a drink even though I’m not particularly thirsty. Last Monday, I had my day 60 bone marrow aspirate and biopsy, as well as a spinal tap. I do all of my procedures on the floor with Versed (conscious sedation) instead of going to the OR. The past few times, I’ve gotten IV Versed but it didn’t seem to work as well so I asked for oral this time. I got 13mg, more than last time but less than the dose for my weight because I’m always extra sensitive to anything that makes me sleepy. I talked to my nurse for a while and my doctor came in a little before noon and saw me still sitting up. There was a brief conversation about whether I needed more Versed but I told them I was starting to feel sleepy and probably had enough. That’s the last thing I remember until I woke up at 7pm (though I thought it was sometime in the early morning because it was dark). Luckily, my mom knew how I was feeling so she could answer all the questions while I slept through my appointment. As I expected, the Tacro was discontinued, as was the blood pressure medicine I was on because of the Tacro. My heart rate was high so I got some fluids, and it improved (though whether that was really the fluids or my extreme Versed relaxation, who knows). The procedure went smoothly and I didn’t move or say a word. Apparently I refused a wheelchair (not surprised) and said I could walk to the car, which I did but don’t remember at all. I came home, changed into sweats and went to bed, though again, absolutely no recollection of any of that. Even though I slept until 7pm, I was back asleep by 10:30 and slept through the night. I was pretty stiff on Tuesday, and still a little groggy until the evening. After dinner, I was on facetime with my friend when I got a phone call. It took me a little bit to recognize the number as one of my doctors, and once I did I wasn’t sure whether or not I wanted to answer, knowing he must have my test results. I didn’t make a decision quickly enough, so it went to voicemail and he called my house. I heard a cheer from my mom in the living room which told me everything I needed to know – I’m still in MRD negative remission! This was such a relief, especially since I haven’t had signs of GVH. We really appreciated the call that night instead of spending more time wondering about the results. I also found out later in the week that I have normal B cells and should be making my own antibodies for the first time since my modified T cell infusion more than two years ago! I will eventually be able to stop my subcutaneous antibody infusions, but immunology wants to continue to follow me until at least the end of flu season. My Thursday appointment last week was long but it was much more entertaining than Monday. I had PT and my knees have been feeling much better. Even though the problem is still there, having stronger muscles helps take the strain off the bones. My clinic appointment wasn’t technically until 3:30 but we checked in right after PT and got things started. Zaching Against Cancer had a group there doing free manicures and haircuts (not sure how many takers they got for the haircuts in oncology though) so I got a manicure while I waited. My labs looked good and there were only three red blood cells in my urine, which is normal, so the BK virus seems to be behind me for now. My heart rate was high (in the 150s) so I got a bag of fluids and while that was running, I checked out the monthly young adult hangout to get Chick-fil-a. The fluids didn’t do much for the heart rate, so they did an EKG and decided to do a bit of an experiment. First I was supposed to stay horizontal and relax, so I got a pillow and a warm blanket and almost fell asleep in a dark room. My heart rate dropped significantly. After a few minutes sitting, it was a bit higher, and after standing for a while it was almost back where it started. Then they sent me up and down a flight of stairs, which surprisingly didn’t increase it much (and luckily didn’t bother my knees). I have an appointment with cardiology next week. My heart rate has been elevated for a while and I’m off the medications that might’ve been causing it so now they want to know why it hasn’t come back down. Maybe it’s the anxiety from waiting for GVH or the relapse they seemed so certain of if I didn’t get any? I’m supposed to try to eat more salt, but I don’t eat a ton of salty food or snacks so I might have to get creative. Even though I’m still in remission, which is absolutely great news, it is unlikely to be a deep, lasting remission unless I get some graft vs. host disease and the graft vs. (any residual) leukemia effect. I just stopped my immune suppression last week, and it is unpredictable to begin with, so I could see signs in a week, or a month, or a year… Hopefully sooner rather than later. There are a few things they could do to stimulate it, but these things would stimulate it to the point where it is very difficult to control and nobody wants that. So for now, we wait. I’ve had some diarrhea, really dry skin, and itchy eyes, which could all be signs of a little GVH but nothing definitive or as severe as the doctors are hoping for. For the most part, I’m doing okay with being stuck at home. I love my family, Clyde is great to have around, the food is delicious, fall is beautiful, and I’m decently busy during the week. Plus, my friends are in class or at work so a relaxing day doesn’t seem too bad. Weekends are a lot harder and Halloween was definitely one of the hardest yet. The last Halloween that wasn’t during treatment for me was 2012, and even that wasn’t great because there was a huge storm. This weekend, social media was a constant reminder that everyone was either outside my radius or in places too crowded for me to go. Which is completely normal for 22-year-olds, but one of the first times I’ve felt this wider radius was extremely limiting. I’ve been able to go most places I wanted to, except for my sister’s soccer games in Virginia. Yes, my family enjoys having me home, but they’d much rather have me at school where I belong, and I’m anxious to get back. I didn’t actually ask but I doubt I’d be allowed to go in person for winter term. Everyone knows people come to class sick because professors require doctors notes for missing class and nobody except oncology patients go to the doctor for a fever. I can’t get my immunizations, including my flu shot, until six months, which is the end of February. I’m signed up for online classes for winter term so that’s something to look forward to, and once my 100 days are up I should at least be able to visit people. My grandparents visited over the weekend which was nice. Their dog walks were longer and faster than I thought I could handle but I got to spend some time outside at Susie’s soccer game. I got lunch with some friends and also carved my first pumpkin – ever! I’ve watched Susie in years past but this year I carved my own. However, I didn’t leave it on the porch or anything because that would be a waste of perfectly good pumpkin. It’s already been cooked and some of it baked into pumpkin bread. I finally had my orthopedic appointment Wednesday morning. My knee doesn’t hurt at all most days, but the problems with my bones are still there. I have a few friends who have also dealt with avascular necrosis (also known as osteonecrosis – bone death) and had to go to Sinai for treatment because Hopkins wasn’t helpful. I did a lot of research yesterday on the surgery they told me about so that I was prepared for my appointment. Luckily, I had a much better experience than they did. The doctor ordered some xrays of my hips and knees because we know my knees are an issue and it’s common for the hips to be an issue. My hips looked fine and I’ve never had pain there but I appreciated that he was being proactive. After looking through everything, the surgery my friends recommended was the first thing the doctor suggested. He pulled up an MRI image and it was clear even to me that the bones didn’t look right. I didn’t take a picture, but I’ll try to include it in a future update. Basically, a lot of the end of both my femur and tibia, where they come together at the knee, is dead instead of alive. One part has even gotten to the point where it is structurally unsound. Core decompression surgery involves drilling small holes which help relieve pressure and also provide a place for new blood vessels to form and new bone to graft. They would put bone graft in to help the process along, and they would help stabilize the part that is closest to collapsing. This surgery can help slow the disease, and even though I’ll almost definitely need both knees replaced at some point in my life, this will hopefully delay that. I need to get an MRI of my right knee, which is also affected even though it hasn’t been as painful, and I will probably need the core decompression surgery in both knees sooner rather than later. Unfortunately, even though the holes they drill are small, certain movements could lead to fractures until they heal so I would be on crutches for six weeks per surgery, almost three months total. The orthopedist asked about my school plans and I said I’m on a medical leave right now but signed up for classes in January. He said we could do one of my knees soon and I’d be off crutches in time to go back to school. However, I’m signed up for classes online and I really don’t think oncology is going to let me anywhere near school until six months post-transplant when I can get my immunizations. My preference would be to get them both out of the way, avoid flu season on campus, keep myself busy with online classes, and avoid needing to do the surgery during another time of year when I want to spend more time active and outside. Unfortunately, oncology has different ideas. They don’t want me to have surgery on either knee until 6 months post-transplant (end of February). I mentioned that spring quarter starts April 3rd and I would really like them both done by then but I know the oncology issues come first and I understand their reasons. If I get severe GVH like we are hoping, it is treated with steroids which first of all could make the AVN worse but also suppress my immune system and interfere with healing after surgery. Also, depending on the cause of my high heart rate, I also may not be able to get full anesthesia until that is resolved. I feel great, my hair is starting to grow back (still unsure about the color though), my labs are almost normal, so overall, things are going well and I’m thankful for that every day. I know too many people who haven’t been so lucky. Thank you all for the love, encouragement, and entertainment as I (not so) patiently wait for my immune system to be able to handle everything I want to do. Clyde and I love visitors as long as you’re not sick! Don’t forget to get your flu shots! I’m trying not to get behind and tomorrow is a big day, so I thought it was time for an update! When I wrote my last post, I was exhausted and thought I needed a blood transfusion. Sure enough, the next day my hemoglobin was down to 8.4. Although some kids can get down to 7, I usually need transfusions around 9 (normal range is 12-15). That Thursday (the 13th) was a long day in clinic while I got two units of blood and cidofovir, an antiviral to help treat the BK virus in my bladder. I’d been peeing blood and clots for more than a week, and even though the clots were interesting shapes – sharks, snakes, and more – I wasn’t enjoying losing that much blood. While I waited for my infusions to finish, multiple doctors stopped by to say hello and some family came to visit since they were also at Hopkins. We also had a really interesting conversation with the clowns about the scary clown trend. During PT, my therapist pulled up my MRI report. There were at least three issues with my knee, and I need to follow up with orthopedics to get more details. It took a while to get an appointment but I do finally have one in the first week of November. One of the issues is something about alignment, which is probably due to muscle weakness so I’m guessing PT can help. Another issue is avascular necrosis, which is a common side effect from high-dose steroids like I’ve had throughout the years. AVN is death of the bone due to a lack of blood supply, so that’s going to require some treatment. My knee has been feeling a lot better as it’s getting stronger in PT but I know the issue is still there. I was pretty sure I was going to have this problem eventually because of the steroids, but I’m hoping it’s not too bad yet and I can do something to keep it from getting worse. I’m anxiously awaiting my orthopedic appointment! At my next appointment on Monday, I peed in a cup so my nurse and doctor could compare the color to last week. It was still fruit punch red with clots, so they didn’t bother sending it to the lab. A few hours later, I went to the bathroom right before we were about to head home. Something felt different, and I realized there hadn’t been any clots. I looked down, and there was no sign of blood – it was almost completely clear because I’m getting 3 liters of fluid a day. I wanted to take a picture because I was so excited but my phone was out in the waiting room. When I told my nurses and doctor, they pretty much all said “that’s interesting…” and told me it was a good sign but not to be surprised if I had more blood later. For the next few days, I braced myself for clots every time but I never had any more visible blood. I got another dose of the antiviral on Thursday, but as long as I don’t have any more symptoms, I don’t think I’ll need any more. I’m still taking tacro, the anti-rejection drug, and we’ve been having trouble finding a good dose. One appointment, my level will be high, so they lower the dose, and then the next visit my level is too low. They increase the dose, and it’s too high, and the cycle continues. The pills only come in 1mg and 0.5mg, so on Tuesday my doctor suggesting switching to liquid after my level was too high on Monday. After I’ll I’ve been through, my doctor was laughing at how much I didn’t want liquid medicine. My mom called multiple pharmacies trying to find one that could make liquid tacro. Finally, one of them said they could get it by 10am, but when we went in the morning, they said it would be there by noon. Hospital time strikes again! It tastes better than a lot of liquids I’ve had, but I really prefer pills. On Thursday, my level was low again, but since I’d just gotten the liquid the day before, they left me on that dose for the weekend. I’m guessing it’s still too low, but we’ll see tomorrow. I think tonight might be my last dose anyway, because my road map says to stop on day 60 if there have been no signs of graft vs. host disease, and we haven’t seen anything yet. I’ve managed to stay pretty busy, though I’m definitely missing being at Drexel. I’ve edited some things for friends and finally read The Immortal Life of Henrietta Lacks, which I highly recommend! Matt came home from school last weekend and it was really nice to see him. We talk a lot but I hadn’t seen him since his cell donation day in August. Susie’s soccer games were within my hour radius both days that weekend so I could actually go watch and enjoy the beautiful weather. We also went for a short, flat walk at a nearby park so I could be outside without hurting my knee. This week, my mom and I went apple picking with one of our free days. It was really hot for October but nice to be outside and 30+ pounds of apples should last us a while! My dad and I have been going to what we call immune suppressed yoga, a small class with a few other friends from the neighborhood, including another transplant patient. Stretching and strengthening is definitely good for me, and I’m getting better at using breathing to relax. Today, we took advantage of the great weather and went for a hike. I love the fall colors, especially when combined with water. I wasn’t sure how my knee would handle a longer, hillier walk but it wasn’t bad at all! Tomorrow is my day +60, which means my first bone marrow biopsy since my transplant. Fingers crossed that it shows 100% Matt and no leukemia! I’m more than halfway through my chain and continuing to enjoy all your messages. Thank you all so much for your love, support and visits! As we quickly approach flu season, please please please get your flu shots!
I rarely post updates this close together, but I’m trying not to get behind. Plus, I got some good news right after my last update!
On Wednesday, I went to clinic for my usual appointment – check my labs, Tacro level, etc. As soon as my blood was drawn, I went to PT. My therapist looked at my knee and took some measurements. It’s swollen but not too bad, and she showed us how to wrap it to push the fluid up. I did a few strengthening exercises but we are waiting for my MRI and orthopedic appointment to do much more. By the time I got back up to clinic, most of the results were back. My counts looked pretty good. Since I was discharged two weeks before, I haven’t needed any platelets and only got blood once. My ANC is in the normal range, but my immune system is so new that it isn’t as functional as any of yours and I still need to avoid crowds and sick people. Around day 30, I had blood drawn for a test to see whether or not Matt’s immune system had taken over. Usually, when it takes a while to get these results, it isn’t good news, but I think mine may have been complicated because they had to look for Susie and me. Luckily, it came back 100% Donor 2 (Matt)! I have a bone marrow aspiration and biopsy around day 60, and hopefully my bone marrow shows the same thing at that time! During my past few clinic visits, my blood pressure and heart rate have been high. This isn’t surprising with the Tacro. I started a very low dose of blood pressure medicine and it’s been doing the trick. After getting a liter of fluid in clinic, my heart rate drops, so we upped my fluid goal from 2.1 liters a day to 2.5. Even drinking 2.5 liters a day, my heart rate was still high, so now I get a liter overnight as well. It’s nice to only be connected to the IV pole during the night because it’s a pain to drag around the house. I got a handy app on my phone to keep track of how much I’ve had to drink. It calculated a goal for my weight, but let me adjust it to 2.5 liters. I also put in the time I usually wake up and the time I go to sleep so I can see whether I’m on track throughout the day. Mine is called Water Drink Reminder (in the Play store, but I’m sure there are tons of similar options for iPhones) and I highly recommend it if you’re trying to stay more hydrated. On Wednesday afternoon, one of my friends from camp came to visit which was really nice. While she was here, my doctor called and said my Tacro level was 29.9 so I shouldn’t take any more until it came back down. They reran the test three times and got the same thing, but we were all surprised because I felt fine, unlike when my level was 21 when I was inpatient. That evening, I also started peeing blood and clots. I was very confused when I felt the first clot because it didn’t hurt to pee like it did before. Even though Thursdays are usually free, we had to go back to clinic for another Tacro level. It was down to 13.3 which was much better, but not low enough to start taking more. Nobody was too concerned about the blood, so I guess it’s relatively normal. I was nervous because my hemoglobin dropped from 10.9 Wednesday to 9.9 Thursday. Even though they said we didn’t need to come in on Friday, we went in anyway because I wanted to make sure I didn’t need blood before the weekend. I normally need transfusions around 9 and didn’t want to go to the ER. Everything looked fine and my Tacro level was down to 11.7 so I restarted that Saturday morning. I’m still peeing blood but as long as it doesn’t hurt, it doesn’t bother me too much. Another one of my friends was home this weekend so it was great to see her. On Monday, my clinic appointment was pretty uneventful. My Tacro level was still a bit higher than we want, so I’m down to taking it only once a day. On Tuesday, I woke up with a migraine already bad enough to make me nauseous. I showed up to my 8am MRI with my yellow basin because my Gatorade, Zofran, and Tylenol weren’t staying down and my scopolamine patch wasn’t quite enough either. The MRI room was dim, which was good, but it was loud and freezing. They also made me take off my scopolamine patch but by some miracle I made it through an hour of imaging without puking. My mom put the patch back on as soon as they were finished. When we got home, we reconnected my IV fluids. I spent the afternoon trying everything I could think of to get rid of my headache because I knew food would not be an option until then. By 6pm, I was finally able to keep some Tylenol down and drink some hot chocolate. Throughout the evening, I managed to take most of my pills, one or two at a time, half an hour apart, with hot chocolate. This morning, I woke up feeling much better but I could feel the beginning of another headache so I took my Tylenol and Zofran immediately. I’ve been able to eat and drink today, but I think it's an anemia headache and I’ll get a blood transfusion in clinic tomorrow. I went to the grocery store with my mom this morning (which has been fine in the past few weeks) but less than halfway through the store, I was so exhausted I went back out to the car. I’ll be in clinic tomorrow, hopefully getting blood and an antiviral to help clear up the BK virus that is causing the blood and clots when I pee. It’s hard to tell if it’s getting worse or better on its own because the urinalysis tests for the number of red blood cells keep coming back as too numerous to count…helpful. I also have a PT appointment, and even though I haven’t heard anything about the MRI, I think my therapist should be able to see the report so we can start fixing my knee. I love fall colors and weather and really want to be able to enjoy them! Thanks, as always, for the love and support! Please also send some good thoughts to Juliana, another Cool Kid who has had a really rough week in the PICU. Love you all! As usual, this update is way overdue. When I’m feeling great, I’m usually pretty busy. When I’m feeling awful, I don’t want to write a blog update. Anyway, I’m at day 39 post-transplant and feeling pretty good. My inpatient stay was a bit of a rollercoaster and very much fit our motto of “high hopes, low expectations.” Some of the hospital staff thinks this is really sad, but from our side, it’s so appropriate. We always hope things go according to plan, but we can’t expect that they will or we would spend a lot of time disappointed. I headed inpatient on August 19th, right after my last update. My Hickman placement was scheduled for early afternoon, which was really annoying when I wasn’t allowed to eat or drink, and even more annoying when it got delayed a few hours. When we met with the surgeons, we told them about all the difficulties with my port placement in July. A fairly new PA was going to do the procedure with supervision from a more experienced PA, but it quickly became clear that she would probably be watching most of my surgery instead. Luckily, everything went smoothly and I was in recovery much earlier than expected. This Hickman is off to the side of my chest so the tubes are almost in my armpit. The best part about getting admitted on Fridays is that the Forever Fierce Foundation, started by a camper’s family, brings food for the inpatient unit so we don’t need to eat hospital food. We were talking to some of the doctors about what I did with my last day of freedom. I thought our hike was a great idea but they looked slightly horrified and asked “you weren’t wading in a natural stream were you?” Wading… swimming… standing in a waterfall... no of course not! We hadn’t given much thought to the possibility of bacteria in the water, but I didn’t have any open cuts so it was okay. I started transplant prep and it really wasn’t bad, which probably sounds ridiculous. The full-intensity prep hit me pretty fast a few years ago, but reduced intensity was much more tolerable. The low-dose Cytoxan was even less than I had for CART prep, and it didn’t immediately destroy my taste buds like it usually does. For the most part, I felt completely fine and was drinking enough to be disconnected from my IV pole so I spent a lot of time wandering around the hospital (sometimes with my squid hat after a dare from the nurses). I quickly advanced in PokemonGo, and discovered some new-to-me Hopkins landmarks, including the dome and the Jesus statue. Matt’s cell harvest was on the 24th, the day before my transplant. When he got there, someone said he was supposed to come the day before, and that his cell harvest was supposed to be started already, even though based on the appointments he had been given, he was hours early. We never really figured out why there was such a mismatch but they got the cells they needed and that’s what matters. He had to sit with his arms straight for four hours, which was mostly just boring at first but got painful toward the end. I’m not sure why they don’t have TVs or movies for people to watch during the process. My dad and I went down to sit with him and my mom for about an hour before my radiation appointment. The apheresis machine they were using was newer than the ones we’ve seen for my T cell collections at CHOP and NIH. Radiation took less than half an hour which was nice. Since I only got one low dose, they didn’t need to set up the lung blocks or anything. They offered music, and since I didn’t specify anything, they put on a playlist called Easy Listening. It was the kind of thing you’d expect to hear in a store, which is easy to listen to but it has a good beat. It was not Easy Listening When You Must Stay Completely Still. Matt finished apheresis around the time when I finished radiation. After his cells were all collected, someone realized he had signed the wrong consent form. He had heard all about the risks of the peripheral harvest, but signed the paper for a bone marrow harvest. Oops! They came up to my room for a little while before Matt and my dad left to move Matt back to College Park. He was tired and his arms were sore but he recovered pretty quickly. We asked what time the infusion would be the next day and the nurses told us between 11 and noon. My dad brought Susie in mid-morning so we would all be there (Matt was at school but represented by his cells). I had additional visitors all morning long, but noon came and went with no sign of cells. Around 2, my nurse came in, obviously irritated, with a bag of fluids. She told us Matt’s cells had been on the floor but they sent them back because I needed three hours of hydration before I could get them. We asked about the fluid rate and it was less than a cup per hour. We immediately asked to talk to the doctors. The fellow came in and explained that the fluids were because of the mismatched blood types (I was O+ from Susie, but Matt is A+). Because of the harvesting method there were a few teaspoons of blood mixed in with the stem cells and they wanted to make sure I was hydrated to prevent a certain reaction. This made sense, but we were extremely upset because, first of all, this mismatch is something that we’ve known about all along, and second, my mom and Susie would have to leave before the transplant even started due to another obligation at home. We pointed out that I had already consumed NINE cups of water that day, and asked if we could either speed up or reduce the IV hydration. Between us crying and offering to email the attending ourselves, I think the poor fellow realized we were serious. Within 15 minutes she came back and said the cells were on their way up, I didn’t need IV fluids after all because I was so well hydrated. I really appreciated the transplant date of 8/25/16 because they’re all squares or cubes and it was the 100th birthday of the National Park Service. It seemed so fitting, and hopefully that’s a good sign! When I left for Hopkins for my transplant stay, I packed for about three months, fully expecting to spend my 100 days in Canton (Baltimore) like last time. However, one of the doctors (who happens to live a few miles from us) hinted that I might be able to actually go home this time. Eventually, the doctor in charge of my transplant regimen came to talk to us and confirmed that I could go home instead of staying in Baltimore. In adult oncology, patients have a radius of an hour, but kids have to stay within the beltway. I’m technically an adult, and they believe we are a responsible family (we are for the most part…when we break rules, we are aware that we’re breaking them). The main concern is infection/sepsis, which affects kids much faster since they are smaller. We are also fairly close to our local hospital, which is a Hopkins facility. This wonderful combination meant we could go home, and we were so excited! I received high-dose Cytoxan on days +3 and +4, which helps make room for the new cells and reduce GvHD. It causes an awful burning feeling in my nose during the infusion, but on the second day, I learned that Benadryl significantly reduces that. Is there any symptom Bendryl doesn’t fix? It’s been such a miracle drug for me this summer! My cousin came to visit that weekend, and we showed her all around Hopkins. She’s a nurse, so we are trying to tempt her down here. After she left on Sunday, my temperature was climbing. I spiked a fever from e. coli inside my gut, but it went away quickly with the right antibiotics. I started some immune suppression medicines on Thursday, which seem to be standard for half-match transplants. CellCept was three times a day, and I couldn’t eat for half an hour before and an hour after taking it. You’ve probably noticed that I hate things that restrict when I can eat. One of the nurses helped me come up with an ideal schedule so that it didn’t interfere too much with meals. I was scheduled to take it at 8am, 4pm, and midnight, which was great except that pharmacy frequently was late delivering it and the whole schedule would get thrown off. I learned that in adult oncology, patients can’t eat for an hour before or two hours after. Can you imagine people telling you to try to maintain your weight, which you can’t eat for nine hours of the day? Thankfully, they realized that’s ridiculous for pediatrics. The other drug, Tacrolimus, was a three hour infusion starting at 9am and 9pm. They check the level MWF because it can easily be affected by diet and other medications. My original goal was a Tacro level between 10 and 15. I started it on a Thursday, and my Friday level was around 13, which seemed perfect. Over the weekend, I had miserable headaches, insanely high blood pressures (150s/100s when I normally run low), and blurry vision. The first time one of my nurses came into my room Saturday night, she listened to all my symptoms and immediately identified it as a textbook case of Tacro toxicity. All weekend long, the nurses tried to tell the doctors it was a Tacro issue and the doctors said of course not, her level is 13. Well yeah, it was 13 on Friday…by the time they checked it Monday morning, it was up to 21! They quickly discontinued my Tacro for a while until the level came back down, and they also reduced my goal range to 5-10. They restarted the Tacro on a Wednesday at half the original dose. When someone mentioned checking it again on Friday, we insisted they also check it Thursday. Sure enough, that dose was still too high and it got reduced to a third of the original dose. After I was finally getting over the Tacro issues, I got another fever that Friday. It continued to get worse, and every time my nurses would click on my name, it popped up with a warning that I met the criteria for sepsis. It took an absurdly long time to get the right antibiotic. I know it can take a little while for the cultures to grow, and even longer for the antibiotic sensitivities to come back, but they figured out it was e.coli again pretty quickly, and we already know I have e. coli resistant to many antibiotics, so I don’t know why it took until Monday to start one that actually worked. Sure enough, my fever was gone after two doses. I was finally feeling a little bit better when I noticed I was peeing frequently and felt like I couldn’t completely empty my bladder. We had to switch rooms that day because the rooms are deep cleaned every 30 days. We were technically a little overdue, but luckily they didn’t make me move while I was miserable with the fever. By the time we had packed up and moved to the new room, peeing was so painful that I cried every single time. I told my mom and my nurse that I would rather have that awful port placement surgery again and I still stand by that 100%. I have a pretty good pain tolerance and rarely take pain meds unless I really need them, so everyone knew this was serious. Although it seemed similar to what I’ve heard UTIs are like, it was actually BK virus, which most people have but it doesn’t usually cause any harm until you’re immunosuppressed. Cytoxan can make things worse, especially if you’ve had a lot of it like I have over the past 3 years. I thought it couldn’t get worse, but then I started peeing blood clots. I was on one medicine that made peeing less painful but turned it orange. Another one helped my bladder relax, and was supposed to turn it blue. I’ve posted fun colored pee pictures in the past, and this was certainly interesting but just too gross and painful for me to even consider a picture. Sorry! On that first day, the night resident came in and said there’s a medicine for the virus but they weren’t going to give it because it has side effects. I kind of gave her a blank stare, like hello…I just had a bone marrow transplant, I’m well aware that everything has side effects. I finally asked how long it takes to go away on its own. It usually clears up on its own in about two weeks. I don’t remember if I asked her to go away or whether I just thought it. I could not imagine two more weeks of that. To add to the fun, my hair was coming out pretty rapidly and I knew it was at the point where if I ran a brush through it, I’d have more on the brush than my head. I had my mom buzz it down to about half an inch. Luckily, by the next day, the colorful medicines were more effective. Peeing wasn’t pain-free, but there was a huge improvement. The day team was also a lot more helpful. They explained that the medicine has kidney side effects, which they want to limit because the Tacro is already hard on the kidneys. They also explained that they could put in a catheter and inject the medicine directly into the bladder with fewer side effects. With the catheter, they would also be able to remove some of the blood clots, in what the doctor described as a roto-rooter procedure. His words, not mine. Definitely not the most pleasant thought. By this point, we were really expecting to see some count recovery and signs that my new cells were working. However, my nurses reminded me that any white blood cells being produced were immediately going to try to fight my infections so they wouldn’t just be floating around my bloodstream to show up in a CBC. Even so, the doctors decided that it was time to start GCSF, which stimulates the bone marrow. Urology didn’t have space for me that day, and by the next day the combination of the colorful medications and my rising counts seemed to be really improving my bladder issues. I opted to give it another day to see if it would continue to improve on its own, rather than going for the roto-rooter procedure. With my counts on the rise (even if they were artificially boosted) and my infections clearing up, we could finally start thinking about getting out of there. I had a ton of IV meds from when I was nauseous with the Tacro issues and fever, so we started switching them back to pills. Tacro also got switched to a pill, and we had to make sure that transition didn’t send my levels out of whack again. For almost two years now, I’ve been doing subcutaneous antibody infusions every other week because the CART cells were attacking my B cells and I wasn’t making my own antibodies. I hadn’t done any infusions since I was inpatient, and my level was dropping. The doctors wanted to boost it a little before I left the hospital. IV antibodies are the norm, but they take hours and require Benadryl beforehand and lots of vital signs during the infusion. SubQ infusions are faster and don’t require any of that, and now that I’m used to them I really didn’t want to go back to IV. The pharmacy had Hizentra, so the doctors ordered it for me, but they realized they didn’t have the infusion pump I normally use. My mom brought it in the next day, and then they also realized the hospital didn’t have the tubing that sets the flow rate or the right needles. My mom emailed my immunologist at Hopkins to ask if she had extra tubing we could use. Immunology is apparently very protective of their patients and was very unhappy with oncology because I had been inpatient for a month (with no antibody infusions) and gotten a transplant and they hadn’t been notified. The immunology team came over to see me and my friend brought in some extra tubing we had at home so I eventually did get my infusion. We still have no idea why the pharmacy carries the drug if they have no way to give it. When the nurse brought it in, he handed me the syringe and left me to infuse it on my own because they aren’t trained to administer it. We thought someone might watch or come see how it worked because people seemed intrigued but only the fellow came by as it was finishing. I finally got discharged on September 21st. We had ice cream in the freezer from when my friend’s parents came to visit and brought an ice cream party. I ate all of my favorite flavor and we ate some of the others, but we didn’t have a cooler so we left the rest with the nurses so they could celebrate finally getting rid of us. One of the nurses asked what the first thing I was going to do when I got home was, and I told her I would probably take a nap in my own bed. It didn’t quite work out that way – I saw my cat, much sicker than he was when I left, and I just sat with him and cried. I didn’t have to go back to clinic until Friday, so I had been thinking of all the things we could do with a whole day of freedom. In reality, we took Jumper to the vet and had to put him down. Going from two cats to one last summer was hard because I’d never lost a pet, and going from one to none was hard because it felt empty without any cats after 17 years. I’m so glad I was home and able to say goodbye, but after saying goodbye to Clyde earlier this summer (he was my roommate’s cat, but I spent the most time with him when I lived in Philly), it felt like something was missing. Overall, it has been amazing to be home, eating meals with my family and sleeping in my own bed. Home is also a lot more convenient for a lot of our family friends to come visit. The only weird thing about being home is that in a way it feels like any other time during treatment, not the critical 100 days post-transplant. Last weekend, one of my roommates was in Maryland, so we went out for brunch. It was really nice to spend some time with someone my own age and catch up on the last few months since we last saw each other. That night, my family and I went to the Cool Kids 10 year anniversary gala at the B&O railroad museum. There were a lot of people there and I know it’s not where I should’ve been 30-something days post-transplant, but to be completely honest I had been planning to go even when I thought I’d be stuck in Baltimore for the 100 days – after all, it’s within the beltway. It was such a cool venue, the food was great, and I finally had a chance to wear my prom dress again! I had a painting and a painted platter in the silent auction so I enjoyed checking on them throughout the night. I was pretty exhausted, so after saying hello to everyone I knew, I spent most of the time at our table watching the band and the dance floor. I knew going to a big event was questionable, but of all the events, this was the one to go to. A lot of the attendees were either patients’ families or volunteers so they are germ-conscious, and I didn’t notice anyone coughing or sniffling. Thanks to the internet, it didn’t take long for some of my doctors and nurses to find out I went to the gala, and it was somewhat amusing in clinic later that week as we got a range of comments from how nice we all looked to a reminder that we really shouldn’t be going to things like that right now. The night after the gala, I woke up with miserable foot and leg cramps. I texted my mom and she rubbed them for a while which was enough to sleep for a few more hours. When I woke up again, they were worse, and it took both my parents rubbing and stretching my calves and feet to get them even a little bit under control. We ran through possible causes…low potassium? I ate some yogurt at 4am. Dehydration? I drank a 20oz bottle of Gatorade in less than half an hour. Once I could finally stand up and stretch, they got a little better. I started stretching every night before I go to sleep, and I’m also taking magnesium and eating more yogurt. So far, the combination seems to be working. Some of my family was visiting from Maine on Monday. It was great to see them and we went out for hibachi which is always especially entertaining with people who haven’t been there before. A few family friends came to visit on Tuesday which was great, though I was pretty exhausted by the end of the day. On Tuesday, I also got a text from one of my roommates, asking if I wanted to take Clyde. Within 20 minutes, one of my friends agreed to keep him for as long as I needed until another one of my friends could drive him down to me. I wanted to bring him home when I moved out in August, but with Jumper being sick this probably worked out better anyway. On Wednesday, we had a long day in clinic because I needed blood. My blood is apparently too complicated for the normal type and screen process, so it got sent to specials, which we heard can take forever. Luckily, I seem to only be a little bit special because it didn’t take too long for the blood to come up. Even though my blood type shows up as A+ (Matt’s blood type and my original blood type), the nurses were guessing I still have some antibodies from Susie (O+) because it can take some time to fully change over. I got two units of O+. My left knee started bothering me. I’ve had knee issues in the past so I didn’t think much of it until it got much worse throughout the day Thursday. By Friday, I was limping around and when I went to clinic they sent me to get an xray. It turns out, I have an osteochondral defect and I’ll be getting an MRI next week to get more information. I hope it’s mostly a muscle weakness issue and can be helped by PT! I went once a week while I was inpatient but might need to go more frequently now that I’m outpatient. This weekend, I promised not to break any rules, but it was still one of the best weekends I’ve had in a long time. One of my friends was home from Chicago, and while she was visiting on Saturday, three friends from school surprised me and showed up with Clyde! He’s been living with dogs for the last few weeks, which seems to have terrified him, then after being passed around to multiple people on Friday in preparation for his trip to Maryland he was a bit timid. He relaxed pretty quickly though and has gotten used to the sounds in our house that originally had him on edge, like the clock that chimes every hour. My mom and I got him a few toys on Friday, and everyone is enjoying having a playful cat around. It’s also much easier to share a full bed with him than the twin I had at school, even if he is bigger now. Sunday, my friend and I sat in a used book store for hours and then another friend (sort of) surprised me while she was home for the weekend! I really don’t think I stopped smiling all weekend – it was so great to see everyone and our house doesn’t seem as empty or boring anymore now that there’s a kitten to play with. He’s full cat size, but not quite a year old so he’s extremely playful. I haven’t really seen any signs of GvHD yet, but I know/hope they are coming since the doctors think I need GvHD to be cured. With so much uncertainty, I decided to take fall term off from school. It was an extremely difficult decision because I had a lot of great classes this term, but I have other things I can work on and I know my health is more important. Plus, with appointments three days a week, I don’t have as much free time as you’d think. I have a few things I can work on if I need to feel productive and camp planning has started again! I’ve had lots of wonderful visitors which has made the time much better both in the hospital and days when I’m stuck at home. Even at half an inch, my hair was still getting everywhere so I had my mom cut it as short as we could get it. It’s a little patchy at the moment because some of it refused to come out, but it’s very short. I can’t tell yet how it’s going to grow back, but it should start soon, which is good because my head is getting cold as the temperatures keep dropping. My countdown chain is going well and I’m trying to thank people as I get to their submissions. It’s provided plenty of entertainment ideas and lots of great jokes and fun memories, plus it was great decoration in my hospital room. Thank you all so much for the cards, texts, visits, prayers, meals, and support for me and my family throughout all of this. We couldn’t do it without you! The last two weeks have flown by. The roller coaster continues, this time starting pretty high with camp and good test results before a lot of ups and downs and confusion. Luckily, everything is sorted out now, and today we start my 100 day countdown with day -6! Before I share my updates, I should share that the New York Times article I mentioned in a previous update was finally published! It’s a long but interesting read featuring a photo of me and Clyde! If you’re interested, here’s the link! I wrote my last update on a Friday after I had been in clinic. My hemoglobin was 8.6, which isn’t awful, but is pretty low for me. I’ve been dizzy and needed blood transfusions in the past around 9, but I wasn’t having any symptoms that day. On Saturday morning, I was packing for camp and realized how tired I was. Walking back and forth across the house gathering last minute items was exhausting (and our house isn’t that big)! My mom asked if I wanted to go to the emergency room to get blood, and I considered it briefly but really didn’t want to spend all day Saturday in the ER when I could be at camp. I knew I could get a transfusion at camp on Monday so I decided to wait. My mouth sores were still pretty painful (though not as bad as last time) so I waited until after I ate a nice soft lunch at home to go to camp. I probably should have taken a nap too, but I didn’t. It was great to see everyone, and luckily dinner was soft enough to eat without pain. The first night of camp was the night of the Ellicott City flooding, and the rain didn’t miss camp either. I went shopping for last minute supplies with the activities director, and we got a phone call asking us to stop at Home Depot for some sandbags. After running through the river of the parking lot, we found sandbags and realized they weigh 60 pounds. She’s very pregnant and I was exhausted – we were probably the two worst people for this particular errand but luckily the employees were great and loaded a dozen sandbags for us. The road back to camp was flooded so I found a detour, and thankfully the rest of the night was uneventful. In past years, I’ve slept in the trailers, but this year, I got the extra bed with the medical director. They were taking no chances with me! It worked out well though, because I had the weakest immune system I’ve ever had at camp and this was the first year I didn’t come home with a cough or cold. Also, with only four people in our cabin, my naps were much less likely to get interrupted than in the trailers with six or seven. The campers arrived on Sunday, but I was taking my first of three naps for the day. All day long, people were commenting on how pale I looked, and by the evening, I had a really bad headache. I rarely drink caffeine, but after multiple cups of soda and lots of ice packs, I felt much better. Normal camp activities started Monday. I woke up early for a blood draw, which showed my hemoglobin was still 8.6 but everything else was dropping and I was having symptoms so they ordered a transfusion this time. Even though my activity is inside and easy to run, the morning was extremely draining. After the opening ceremonies for our Camp Sunrise Olympics, I went to the “funny farm” (our medical building) for my blood transfusion. Each unit took about two hours, so I spent quite a bit of time with the medical staff. The timing worked out that I could grab dinner between the two units of blood. Even though the weekend was a little rough, I’m glad I waited because there is no hospital time at camp. While I waited for the lab results and the blood to arrive, I could continue enjoying my day. It was also more interesting to talk to the medical staff than to sit in clinic and play games on my phone. This is the first year I’ve really needed anything from the funny farm, but spending so much time there gave me even more appreciation for camp and how well they can take care of kids on active treatment and let them have a fun week no matter how sick they are. The rest of the week was much better, and the exhausted counselors started jokingly asking for some O positive after they saw how much more energy I had. I think my nap count for the first few days exceeded the rest of the week combined. They did labs again on Wednesday and my platelets were low enough to stop my chemo pills but not low enough to transfuse. I was fine with holding the chemo because it’s supposed to be taken at least an hour after eating food. With dinner at 5:15, I always wanted a nighttime snack. The instructions from the pharmacy say to take with or without food, but the doctors insist it gets absorbed better without food, and I want it to work. The week was really busy but everyone made sure I rested when I needed to. I had so much fun and I am incredibly grateful that I got to go after all. On the last day of camp, we had the 30 year reunion. I only stayed for a few hours but it was enough time to see a lot of people I haven’t seen in years. I held my friend’s baby for a while, and he really liked playing with my hair. It’s been thinning again, and I think he may be the reason behind one small bald spot on the side of my head. It’s easy to cover though and I didn’t notice it for days. After a quick jump start for my dead car battery, I finally headed home from camp. I took a nap before going out to dinner with friends before one of them left the next day. On Sunday, I had brunch before another friend left. My friends have all these amazing opportunities ahead of them and as hard as it is to see them all leave, I’m so excited for them and can’t wait until I can visit all their new cities! On Monday, I had a bone marrow aspirate in the morning and an echocardiogram in the afternoon. I usually hate ECHOs because they can be somewhat painful, but this one was what an ECHO should feel like. She told me they shouldn’t need to press hard enough for it to hurt, and hopefully she will be there next time I need one done! On Tuesday, I woke up from a nap to find a good news voicemail – I’m MRD negative/in remission! That was the green light we needed to do all the pre-transplant tests. I thought everything would be smooth sailing once I was in remission, but the last week has been anything but. My first transplant was almost three years ago, so I know I don’t remember everything perfectly. However, I remember it well enough to know it was not this much of a last-minute scramble. I can’t even write this day-by-day because things changed so often. Instead of having a schedule of appointments laid out for me and Matt last week, we would sometimes get a day at a time. It was somewhat difficult to fully take advantage of my last week at home when I wouldn’t know my schedule until the night before. One day, Matt came with us to have his consent meeting, but when we got to clinic they couldn’t do it because they weren’t sure yet which harvesting method they wanted to use (and this was the first we had even heard that they were considering peripheral stem cells instead of marrow). Another day, we had to turn around after we were on our way to Hopkins because they called and said Matt needed to come that day as well, only to get there and find that all he was just getting was a physical, which seems like it could have been any day. Everything has been so last minute, and even the transplant date got switched to the 29th, then the 22nd or 23rd, then back to the 25th. The coordinator mentioned that I’d be getting some of my prep in clinic, which didn’t make any sense to me because nobody told me that my prep regimen got switched to reduced intensity. There was a total body irradiation appointment in my schedule, and I was under the impression that I could not get any more radiation because I got such a high dose last time. Basically, nobody seemed to be on the same page, or at least not sharing any of it with me, and I was extremely upset and frustrated. It was really hard to have faith that this will work when the people in charge of making a plan couldn’t seem to agree on one. I was so upset and terrified that I started looking for the advanced directive forms. I know they’re something I should have filled out anyway, but that was the first time I ever felt like they were really necessary. At this point in my life, I’ve gotten used to some unpredictability, but not having a clue about my schedule when I had less than two weeks left at home before my 100 days begin was awful. Unlike last time, I don’t think these 100 days will be filled with trips to the aquarium and other fun outings. Based on our previous transplant discussion with the doctors when I first relapsed, I thought we would be using Matt’s bone marrow and doing a full-intensity prep regimen. My parents and I got the impression that we were using as little chemo to get me into remission as possible so that my body could handle a full prep, which, from the meeting, sounded more effective. Imagine my surprise and terror when I realized they had me scheduled for reduced-intensity prep. Apparently, they said from the start that if I could get into remission with one cycle of chemo, they would consider doing a reduced intensity prep because my disease is responsive and they’re not relying on the chemo as the cure. Instead, they want to ensure a lot of graft-vs-leukemia effect, which means a lot of graft-vs-host disease for me. They’re using peripheral blood stem cells instead of bone marrow from Matt because that creates more of an immune response. In first transplants, they try to reduce GVHD because it can get out of control. Now, they’re counting on it to kill all of the residual leukemia. I guess this is Matt’s chance to attack me for any of the times I was an annoying big sister. I signed the consents on Monday, and the next three months sound like they will be pretty awful. When my friends were making my countdown chain, I said to leave any extras over the 100 for any bad days. One of them asked how many bad days I was planning on having. I don’t plan on them, but I knew this transplant will be rougher than last time. We ended up with enough chain links for two per day, which will be nice, especially on the tougher days. GVHD is graded from 0-4, and they want me to get to 2.5 or 3. Think head to toe red itchy rash, potentially blistering, while having liters of diarrhea per day. Sounds like fun, doesn’t it? There’s more, but I’ll spare you the details until I actually have to deal with them because it was a pretty overwhelming list of possibilities. And that’s only acute GVHD; there’s also chronic, which is longer-lasting and can impact basically every organ system/quality of life. I’ve done pretty well with quality of life stuff up to this point, my side effects have always gotten better, so that could be one of the more difficult things to deal with later. Over the last two weeks, I’ve had a lot of appointments to get the pre-transplant tests done – ECHO, pulmonary function, and tons of bloodwork. It was really frustrating that I received my schedule so last minute but I still managed to fit a lot of fun things into my last two weeks at home. My dad was working in Camden one day, so I drove up with him and spent the day in Philly. I ran around all day catching up with people. It was really hot, but so great to be back, even if it was less than 24 hours. One of my friends convinced me to get the Pokemon app so I would have something to do in the hospital while I walk laps. It has been entertaining even though I have no clue what I’m doing. The Inner Harbor by the aquarium is a goldmine if anyone is looking! Last week, Justin Berk did his annual trek across Maryland to raise money for Cool Kids Campaign. Each day is in honor of a different kid, and Thursday was my day! To make it extra special, one of our close family friends walked and biked with him that day (and has a team that was with him all week). The trekkers stopped at the State House in Annapolis to meet with Governor Hogan and my whole family met them there. There’s a little museum on one of the floors and you can see where the senate and the house meet. It was a pretty cool experience! That night, we went to the Ravens’ first preseason game. The last Ravens game we went to was absolutely freezing, so this was the complete opposite. It was a good game, but the loudest cheers absolutely came when they stopped the game to broadcast the Olympics and Michael Phelps winning another gold medal. Gotta love the Maryland pride! Over the weekend, I went back up to Philadelphia, this time with Matt. We didn’t think I had enough energy to make the drive alone, and I definitely couldn’t move out by myself. I had concert tickets with some of my friends so it was perfect timing. Matt came with us and the show was a lot of fun! When we got home, some of our extended family was here to visit and it was great to see them. This week, I finished cleaning my room (a much bigger project than I intended it to be), had a few appointments, and luckily squeezed some fun in as well. I finally went to Monster Mini Golf which is how glow in the dark mini golf should be (sorry not sorry Talk of the Town), and went to King and Queens Seat and Kilgore Falls during my last afternoon outside the 15 minute radius of the hospital, followed by tacos for dinner (of course).
Yesterday, I had an appointment to meet with the radiation doctors and get my measurements. My first clinic nurse works in radiation oncology now, so we also got to see her! I’m only getting 1/6 of the dose I got last time, so they didn’t need to make lung blocks or anything. Last time, I had blue outlines of my lungs drawn on me for a while, but this time is much easier. I’m just hoping the machine doesn’t break mid-radiation this time! Because the lung blocks take so long to set up, last time they made me stay completely still while someone came in and fixed the machine. I was facing the wall, so there were just a lot of weird noises behind me. Today, I’m having my Hickman placed, so this blog update is a perfect excuse to hide in my room because I’m not allowed to eat. I specifically asked for my procedure to be done with conscious sedation so I’d be able to eat, but Interventional Radiology doesn’t know how sensitive I am and protocol says no food in case they need to use full anesthesia. I’m really not happy about it, especially because it’s my last morning home before the prep chemo starts and food will taste like cardboard. My procedure isn’t until 12:30, which means more than 12 hours without food when I don’t usually go more than 4. I start the chemo prep this afternoon, and will get chemo each day until Tuesday. I’ll get radiation on Wednesday and my transplant will be Thursday. Matt will be giving himself GCSF shots each day leading up to it to stimulate his bone marrow to make lots of stem cells. Instead of needles in the hips like Susie had, they will take the blood out of one arm, send it through the apheresis machine to get what they need, and give the rest back to him. It’ll take a few hours, but doesn’t require anesthesia and he won’t be sore after. Then we sit and wait a few weeks for the cells to engraft, which is quicker with this method. Then we’ll wait again for signs of GVHD, which is what we really need. The perk of reduced intensity chemo prep is that it should have fewer side effects. They don’t expect tons of mouth sores like they expected last time, so I’m hoping to avoid a feeding tube again, even though everything will taste like cardboard for a while. As far as staying entertained in the hospital, I don’t really have a game plan but I do have a long list of recommended shows and movies to watch. I am signed up for fall classes but I doubt I’ll be keeping them, unfortunately. One of my friends just got a kitten and I’ve been enjoying kitten snapchats. I’ve also really been enjoying the Olympics and I’m sad they’re almost over, but I may watch some of the stuff I missed if I can find it online. I know some of my countdown rings have things to watch or do, and I also want to plan the ultimate summer road trip. The next three months are not going to be easy. If I want this to work, my only hope is that they’re the most miserable months of any of my treatments I’ve ever had. That’s not a fun thing to hope for, and I know there’s a very fine line between killing the cancer and killing the patient. Thank you to everyone who has kept my spirits up with your cards and messages or sent good thoughts my way! I can’t wait to read your countdown entries, starting today with day -6! Let’s get this over with! It’s been a busy two weeks since my last update! First of all, thank you to everyone who contributed to my countdown! With a few last minute submissions, I have enough to open two each day during my transplant prep week plus the 100 days that follow. My friends are putting it together as I write this and I can’t wait to have the bright paper chain decorating my hospital room! I promise I have not peeked (they wouldn’t let me on that side of the room), but it was great to hang out and see it come together before they move this week to start work and grad school. I can’t say I’m looking forward to transplant, but I’m absolutely looking forward to reading all of these messages! I started my second block of chemo on July 15th. My counts were pretty low, so they decided to hold off on one of the medicines until Monday. I finally had my PT evaluation at Hopkins and I was pleasantly surprised to see that I hadn’t lost too much of the leg strength I’d been working on at Drexel, even with a month off. My physical therapist works with a lot of oncology patients and knows some of the side effects of certain medications, so she noticed some issues I didn’t even realize I had. Since we are focusing on some other things, I also started going to the community center gym to keep up my leg exercises from Drexel. Over the weekend, I went to the movies and invited some friends over on Sunday for a belated birthday celebration because I was finally feeling better. I went shopping in the morning for candy for the castle cake and piñata. I was pretty tired from the steroid insomnia and was hoping to take a nap, but three of my friends from school showed up and completely surprised me. It will never cease to amaze me how good my friends are at surprises - they had gotten my mom’s number from one of my friends from home and planned out the whole thing. They helped me build my taco piñata, which was actually their idea back when I thought I’d be celebrating my birthday in Philly. They had to leave before the rest of my friends came over, but the piñata turned out great, and everyone got a good laugh when we broke it and they noticed I had mixed mini bottles of rum and tequila in with the candy. We also made s’mores, played with sparklers, and constructed a castle cake. It’s been a few years since we made a castle cake for my birthday so it was fun to bring back the tradition. You’re never too old for a castle cake! On Monday, I went back to Hopkins for bloodwork to see if my counts were high enough to start the other chemo pills. Everything looked great so after waiting forever to pick up my prescription, we headed to Pennsylvania to visit my uncle. It was really nice to see him and some of our other extended family. We also stopped in Philadelphia to get some more of my stuff from my apartment. It was nice to grab some of the clothes and shoes that I didn’t have space for on the bus a few weeks ago, and I was also happy to see my roommate’s kitten, who kept trying to climb in my bags. After we came home later that week, my grandparents and another uncle came to visit. On Thursday, my friends and I spent the evening on the Magothy River which was just the relaxing night I needed before a weekend inpatient for more methotrexate. It was a beautiful night with an almost full moon, and the water was really warm. I got quite a few bug bites, but for some reason they didn’t show up for almost 36 hours. I guess my immune system is just confused. The next morning, I had a PT appointment followed by a long wait in clinic for my spinal tap. As I was waking up, one of my friends came to say hi because he was also in clinic. They started fluids to make sure I was hydrated enough and my body’s PH was high enough for the methotrexate. It seemed like the day could have been much more efficient, but eventually I headed to the inpatient side. The 24 hour methotrexate infusion is supposed to start within 6 hours of the spinal tap, and it was closer this time but still not quite there. The weekend was pretty uneventful. A few friends came to visit and I played a lot of cards and a new dice game I got for my birthday. I walked a lot of laps, especially in the evenings when there were a lot of people out in the halls to make walking in circles more interesting. There has been a lot of turnover in the inpatient nursing staff. A few of my favorites are still around, but there were a lot of new faces too. Last time, I was allowed to leave on Monday, but this time, my level wasn’t low enough. At one point, it went up from 0.4 to 1, which confused everyone because obviously my body can’t make chemo. On Tuesday, I woke up with cramps and diarrhea, just like the Tuesday after my last methotrexate, only this time I was still in the hospital with terrible toilet paper. The day before, I was obviously not happy to spend another day in the hospital but I was hoping the extra fluids would help my side effects overall. When the doctors came around on Tuesday, I told them I was ready to be home with good toilet paper and my heating pad. The instant hot packs just aren’t the same and trying to pee in the hat for them to keep track of Is and Os (intake and output) while simultaneously puking and having diarrhea was just not a good time. Luckily, my level was low enough that they were comfortable sending me home with fluids later that afternoon. My anti-nausea meds clearly weren’t working, so my nurse asked if I wanted to try some Benadryl. I wasn’t sure that it would help, but it turns out to have been a miracle drug. My cramps almost completely stopped and I hardly had any more diarrhea for the rest of the day. I have no idea why it worked, but I’ve been taking Benadryl all week and have felt a million times better than after the last methotrexate! I think it was some combination of more fluids, more leucovorin to protect me from the methotrexate, and the Benadryl, but it worked wonders. I still got some mouth sores, but they aren’t all down my throat so I can swallow some food and pills. I need to stick to soft foods and small bites though because I can’t open my mouth very wide. You know it’s bad when I turned down tacos because I didn’t think they would fit in my mouth. I’ve had some cramps and diarrhea throughout the week, but absolutely nothing compared to last time which was a huge relief. I was able to eat mostly normal meals and leave the house to run errands because I wasn’t tied to my heating pad. It was also nice that it wasn’t unbearable to talk above a whisper. I realized last week that the transplant timeline in my head was not how it was actually going to play out. I had another bone marrow aspiration scheduled for today (the 29th), and I wouldn’t get the results until Tuesday of next week. All summer, I thought I wouldn’t be able to go to camp, but with that timing, it seemed like I should be able to go for at least half the week. I started bothering my doctors and they agreed that I should be able to go for at least part of it, but then I realized that my methotrexate side effects might pose a problem. Last time, Friday through Sunday were the worst days, and that would be the start of camp. Luckily, the side effects have been tolerable and I should be able to stay the whole time! My bone marrow test got postponed until August 8th to give the chemo a little more time to work and drop my counts, so I won’t even be sitting at camp anxiously awaiting results. Once I get the test results, it will be full speed ahead to transplant if I’m MRD negative. While I’m at camp, my brother will have some tests to confirm that he is a good choice for my donor, and after camp I’ll get all of the organ function tests to make sure my body can handle the prep regimen they have planned. My tentative new birthday (transplant day) is August 25th! That might change, but it’s nice to have some idea of the plan. My hair has been thinning a little from the chemo, but I have so much hair that you’d never know if it wasn’t all over my shirt. I’ve managed to stay pretty busy, so other than one afternoon when I felt completely useless and unproductive, I’m feeling okay about dropping my classes. I don’t think I can graduate on time now, but one of my friends pointed out that she did the same thing and her world didn’t fall apart and she got to enjoy college a little bit longer. Considering how little time I’ve actually spent at Drexel, that’s a huge perk. I’m really looking forward to spending the next week at camp and enjoying my last little bit of summer before I’m stuck in Baltimore for 100 days! Thanks for the continued support, messages, and cat photos! I love you all! |
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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