Tonight’s update is pretty short because there isn’t too much to update you on plus it’s late and I’m tired. The rest of this week will be really busy though so I won’t be posting again until next week and I didn’t want to leave everyone hanging about my first week of GNKG168. The rest of the week was pretty similar to the first day that I described in my last post. Thankfully, we didn’t have to stay that late again. Each day, they didn’t start defrosting my medicine until I arrived, so I sat in the trauma room waiting. I wore long pants and a jacket every day because the medicine was still cold going into me. It’s crazy how quickly that cools you off! I needed my blood pressure taken every 20 minutes during the hour infusion then every 30 minutes for two hours after. After a week of that, my mom is better at setting up the automatic blood pressure machine than some of the nurses! Since I was in clinic every day, I got to see my other friends who had transplants who only come to clinic once a week. Since we started the trial on Tuesday, the fifth day was Saturday. I had to go to the inpatient side of the floor for a few hours so I saw some of my nurses over there that only work weekends and the family of another transplant patient. Saturday was a late night – we didn’t leave until after 9 because the infusion didn’t start until after 6. Overall, the week was medically uneventful, just really boring to sit around at Hopkins so many days in a row. I’m glad I still feel great but some days it makes it that much harder to be sitting there, when I have the energy to be doing fun things. The GNKG168 study involves two week cycles – 5 days of medicine followed by 9 days off. By the schedule, my treatment should be Tuesday – Saturday from now on but luckily the doctors moved it to be Monday – Friday so I can avoid the inpatient side and keep my weekends free. I have a bone marrow aspiration at the beginning of next week that should give us an idea of how well the drug is working so far. On Wednesday, I had pulmonary function tests so I should get the results of those sometime soon. My tests three months ago looked good so these should be fine but they are standard post-transplant. We are still working out the next stage of treatment with the doctors, the insurance, and the options but I will post more information about that next time when I will hopefully have more information. I managed to go to Cool Kids on Monday and before my infusion Thursday which was nice. I plan to be there as much as possible around my medical schedule because I’m much happier when I stay busy. Sunday was the Cool Kids Running Festival, which my family and a lot of friends came to. Our group won six medals (they were by age group), including gold for my dad and Susie! It was a nice day and the food after the race was delicious. I didn’t even do the 5k because I was volunteering but who doesn’t love watermelon on a hot day? The rest of my weekend included a viewing and funeral for my best friend’s grandfather, which I was thankful to be able to attend (though of course I wish a funeral wasn’t necessary) even with all my time at the hospital on Friday and Saturday. I also got to catch up with friends and eat some delicious strawberry shortcake. Like I said, there really isn’t much going on. We are continuing to play the waiting game so keep sending your positive thoughts and prayers! I hope you all have a great 4th of July!
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I finally got my first dose of the GNKG168 drug (the first of two clinical trials in my treatment plan)! As you may recall from last week’s update, I was supposed to start yesterday (Monday). On Sunday afternoon, we got a call telling us not to come in Monday because the insurance was not going to cover the trial and Hopkins was appealing that decision but they didn’t know how long it would take to resolve. Now we know that our insurance doesn’t cover phase 1 or phase 2 clinical trials. I’m guessing a lot of plans don’t (but most people never need to find out) because our insurance seems great overall but the big point here is that my entire treatment plan right now consists of clinical trials. The first, GNKG168, is phase 1 and the second, the CAR-tcell therapy, is phase 1 or 2 depending on the study; there are over 100 around the country. There’s a nice man who we are now referring to as Uncle Ted who is in charge of the money for the children’s center at Hopkins and decides when not to charge for things that insurance won’t cover. The study pays for the medicines, but Hopkins has agreed to cover the lab/clinic expenses. Thank you Ted, for allowing me to start treatment today without waiting for the insurance appeal to go through. If it goes though, that would be great, but if not, we are incredibly grateful. I didn’t go to Hopkins until this afternoon for the GNKG168 drug because it had to be delivered and then defrosted. They didn’t end up starting the infusion until about 4. A one hour infusion, plus two hours of observation after meant we didn’t leave the hospital until 7. Clinic usually closes at 4:30/5, though the nurses and doctors never actually get to leave that early because they have so much work to do. Even so, I think my nurse was the last of the nurses to leave and I was certainly the last patient. We are hoping all of the infusions later this week will start earlier. Even though I didn’t have any problems, they need to report my blood pressure for every 30 minutes after the infusion. Last week one of my doctors thought maybe by the end of the week when they knew I was tolerating it I’d be able to leave early but now I kinda doubt that. At one point, my blood pressure cuff was measuring constantly – as soon as it would deflate, it would start to measure again and my nurse wasn’t sure how to stop the machine. She called one of the younger, more tech-savvy nurses to help and said she was “in the trauma room.” My mom and I simultaneously said “WHAT?!” I’m not entirely sure why I needed to be in the trauma room (it’s right across from the nurses’ station) but I guess it had something to do with the experimental medicine that they’ve never given at in Hopkins Pediatric Oncology before. I think I’ll be in there all week unless a true trauma patient is there. It was sunnier than most rooms and it was nice to be right near everyone because it was easy for people to stop in. A bunch of my doctors/nurses/child life specialists came by to visit while we were sitting around today which was really nice and made the day go by a little faster. During the infusion, my stomach felt a little uneasy even though they gave me Zofran beforehand but I still managed to eat two packs of oreos and two tacos so I can’t complain. The doctors aren’t expecting any crazy side effects from the drug (but I guess the two hour observation period is to be safe) because it is an immuno-modulator. The bag still had a chemotherapy label, which we all thought was odd, but it doesn’t act like chemotherapy. If I remember correctly, it can affect the toll-like receptors and the natural killer cells and hopefully rev them up and make them attack my leukemia.When I googled “How GNKG168 immuno-modulator works” to see if I could find a better explanation, my blog was on the first page of results! Cool, but not very helpful for finding more answers. Next time I talk to the doctors, I’ll ask more about the process, but even when they first talked about it, it sounded like they’ve seen it work but nobody really knows exactly how it works. I guess that’s to be expected for a phase one trial. Since my last post I’ve been pretty busy! I’ve spent a lot of time at Cool Kids getting ready for their upcoming Running Festival this Sunday. I have at least a dozen friends and family coming and I’m really excited! I was worried that the insurance issues might cause my medicine to interfere with my availability after I’d convinced so many people to sign up. I get the drug for 5 days in a row which currently takes me to Saturday. I’ll either be admitted Friday night so they can give it Saturday morning or I will go to the inpatient side for a few hours on Saturday (since clinic is closed on the weekends). Luckily, Sunday is still free. If you’d like to walk or run a 5k or a 1 mile course, let me know by tomorrow (6/25) at noon! Some of you may also have seen on Facebook that they purchased a condo in Myrtle Beach to send families to. Shoutout to Becca for donating some games to send to the condo for rainy days! On Saturday, we went to a cookout at our neighbor’s house. I ate a lot of food, got a ride in a ’67 Firebird and overall had a great normal summer afternoon. I was still full when I woke up the next morning. My family also went for a hike at Sugarloaf Mountain. We are hoping to travel to Maine this summer so we wanted to do a test hike to see what I can handle so nobody has to carry me out of Acadia. It went better than I expected. My mouth gets dry really easily from the radiation and my muscles were tired because they haven’t climbed anything too steep for a while but I made it! That’s about it from me. I’ll try to post another update later this week but I hopefully won’t have many medical changes! Please continue to send thoughts and prayers, not just to me but also to my friend/fellow transplant patient Dale! Thanks, as always, for all your support! Hey everyone! I think my last post got a record number of views - I wish I had been sharing better news! I didn’t learn much of anything new until today which is why I haven’t posted anything. I was also temporarily without a computer and the idea of typing an entire update on my iPad was not particularly appealing. Before I get started on my own updates, I’d like to ask for lots and lots of prayers and positive thoughts for my friend Dale, who’s having some post transplant complications. I really appreciate it and I know his family would too. Thank you to everyone who sent positive thoughts my way last week. Or funny texts. I learned my friend’s karaoke jam, the hours of the nearest chipotle, and lots more. Also, my friend’s timehop last Tuesday (from a year ago) said "in the words of my best friend Karen: plot twist." Weird coincidence, except this year instead of her life, it's my life. I really enjoyed all the humorous texts and messages that helped me laugh instead of cry! I guess I wasn't particularly clear in my last update but I am home! They didn't hospitalize me since they didn't have a plan yet. There wasn’t much the hospital could do for me until all of the tests were done and I was approved for the studies. While I waited for news, I stayed really busy. I constantly needed something to do so that I wasn’t alone with my thoughts – the first time a slow song came on during my drive to work I started crying. From then on, I started only listening to upbeat songs I love to sing along to. That has reduced my crying considerably. I posted my most recent update last Monday. On Tuesday morning, I went strawberry picking with my best friend/neighbor who had never been to Larriland! For everyone reading this from another county/state, Larriland is a pick-your-own farm near my house that has anything you might want and it’s all DELICIOUS. Jenn and I picked almost 20 pounds of strawberries. After I got home, I went to Hopkins for my ECHO (a heart test) and to sign the papers for the first study (the CNKG168 one). My doctor said we’d start Monday (as in this past Monday, which obviously didn’t happen). More on that later. I went to Cool Kids the other three days last week, where they kept me very busy which was great. Thanks to my new medical schedule, I’ll be able to attend their running festival on June 29th which I'm excited about. If you’re interested in a 5k or a 1 mile, sign up by tomorrow (6/20) to be guaranteed a shirt! You could win a medal! In addition to fun things like strawberry picking, I went whitewater rafting for father’s day! It was a pretty calm stretch of river but we had a lot of fun and it was Susie’s first trip so even the smallest rapids put a huge smile on her face! I stopped by the local Relay for Life, I’ve been reading more, and I am slowly reinstalling things on my computer since I got a new hard drive. It’s crazy how much I had been taking for granted on my computer – all my bookmarks and programs like Adobe Reader that I forgot I needed until I tried to open a PDF. Part of staying busy has involved eating lots of good food! I had my first frozen yogurt in over a year last Friday with my best friends, followed by breakfast at Double T the next morning. I went to my neighbor’s birthday party/crab feast and lost track of how many crabs I ate. There were cookies and cake at Cool Kids last week, plus a fancy cake at a Cool Kids/Cabot happy hour (where there was also lots of Cabot cheese, YUM!). I had Wawa one day and I finally had my first Chipotle burrito! I ate the entire thing and it was delicious - I’m trying to figure out why it took me so many years to go. I wasn’t surprised at all when I gained a few pounds since last week. I guess it’s about time for the medical stuff since that’s why most of you are reading this. We’ve spent the last week and a half asking lots of questions and getting answers. The insurance also had to approve the studies, and since I’m over 18 dealing with the insurance is ridiculously complicated. I have to give them permission to talk to my parents about anything – they didn’t even want to give my dad my case manager’s name! Today I had to sign some papers in the presence of a notary public. Yesterday evening, we got an email from my fellow with some updates. First of all, my bone marrow from last Tuesday had the same 1.8% MRD (minimal residual disease) as the week before that. The doctors didn’t have much to say about that other than “interesting.” It’s good that it isn’t growing quickly and it’s good that both labs have accurate MRD tests (the first test was at Hopkins; the second in Seattle). That 1.8% is not visible under a microscope, only through a flow cytometry test that looks at the molecular level. Last week, I got all the tests that are required to begin the GNKG168 study this week, but between the insurance issues and all of our questions, we didn’t begin this week. We wanted to make sure that the GNK study would not affect my ability to participate in the CHOP or NIH CAR T-cell studies. CHOP confirmed that the GNK will not interfere, and they think it is a good option in the meantime while I wait. Studies only take a certain number of people, and I am the last person accepted into the GNK study. Just to refresh, the doctors want to do the GNK study to keep my leukemia level stable because the CAR T-cell treatment takes time to genetically modify the cells. There are two CAR studies nearby – NIH and CHOP. The CHOP study requires 5% blasts, which I think means 5% of the white blood cells visible under a microscope must be leukemia cells. Right now, it isn’t visible under a microscope at all so I don’t currently qualify but they would harvest the cells anyway. The NIH study is currently closed but they are planning to re-open it so I’m already on the list. That one does not have a minimum disease level so that is obviously preferable. I’d rather treat what I’ve got instead of letting it grow in order to treat it at CHOP. However, I will be put on both waiting lists just in case. Clinical trials require a month between them, so I can’t get the modified T-cells for a month after my last GNK infusion. The month allows for better control with the medications, since they want to know which therapy is really helping. At this point, none of my T-cells have been harvested at either NIH or CHOP, though hopefully that will happen soon. This morning, I got another ECHO and a lot of labs because they need to be done within a week of starting the GNK study. I also needed a spinal tap, which I didn’t know until I got there. I hate when they spring those on me! Oh well, it went fine and I didn’t sleep all afternoon. I am all ready to get my first dose of GNK on Monday afternoon. Each dose is a one hour infusion followed by two hours of observation, and I’ll be getting a dose Monday through Friday next week. After that, I have a week off, though they’ll check my bone marrow once. The next week, I’ll get more GNK and the cycle repeats for up to 12 weeks (6 cycles). I don’t think I’ll need it that long, but that’s what is available. At some point, my t-cells will be harvested so they can be modified, and the schedule for the t-cell therapy will help determine how many cycles of GNK I need. That is all TBD right now. A family friend sent us an article about the CAR T-cell treatment that helps explain things a little more. If you want to know a little more about the science, check it out! I’m probably forgetting some things but it’s late and I want to sleep. Basically, I’m still feeling great, my leukemia didn’t grow, I start the first trial next week and I’ll hopefully be getting my t-cells harvested in the upcoming weeks. The first trial is outpatient so I’ll be continuing tostay busy and enjoy summer! I hope you all are doing the same! Also, in case anyone was wondering about the title of this post, it’s lyrics from a country song (again), called Sounds Like Life to Me…”the only thing for certain is uncertainty, you gotta hold on tight, just enjoy the ride, get used to all this unpredictability...” Sounds pretty accurate to me right now! As most of you probably guessed from my facebook status yesterday, I have some bad news (though I stuck some happy stuff in here too because I refuse to post an entirely negative update). Usually when I sit down to write these posts, a good title comes to mind. Today I’ve considered everything from “goodbye poster child status” to “bad news during finals week is extra bad news” to “life throws curves.” This is Drexel’s finals week because we have quarters. Luckily I’m only taking one class right now because of my internship so I only have one hour-long exam. I don’t think I could handle studying for more than that right now. Anyway, the title for this post actually came from one of my best friends, Morgan. When I texted her the news, her first response was “If leukemia was a guy, that Dixie Chicks song ‘Goodbye Earl’ is what I would play the next time I see you.” That was just the motivation I needed to remind myself that this is a rough patch on the road but I can get through it. Laughter is great medicine. Last week’s post mentioned my 6 month bone marrow aspiration that needed to be clear to take my port out. On Friday, while I was at work, my mom got a call that said the results were not as everyone expected: they showed 1.8% leukemia. The leukemia has not yet made it into my blood, it is just in my marrow, so we caught it early. My last bone marrow aspirate was three months ago and that one was clear. What does this mean? I wish I knew. I haven’t even known for 24 hours. I had bus tickets to head to Drexel for the weekend to visit some friends and help my boyfriend move into his new apartment. I know my parents were shocked, devastated, heartbroken, and every other sad adjective out there on Friday but they made a very thoughtful decision to let me enjoy the weekend worry-free and I’m incredibly thankful for that. Sure, I might have tried harder to see even more people if I’d known (because now I’m not sure when I’ll be back next), but I don’t want my friendships to revolve around my illness anyway. I saw a bunch of people, even if it was for a brief hug, and I had a nice weekend of normal, riding the bus without a mask and eating at restaurants. My bus ride up was wonderful – I had a front seat on the upper level of the bus, it was on time, the outlet worked, and I didn’t hear a single cough or sneeze the entire ride! Some of you may know or remember from previous posts that I used to drink a ton of milk but it started tasting like chemicals from the chemo in the fall. My family and friends have been bothering me since I got home from Baltimore in February to try milk again. I refused because it was just so gross in the fall. Over the weekend, Phillip made me breakfast and got milk to go with it so I gave in and tried it. It doesn’t taste like chemicals anymore, but it didn’t taste good either. I’m hoping it’ll taste better eventually! Another story from the weekend to keep this update not as depressing: Now that I can eat out without worrying as much about germs, Phillip decided to take me out to dinner for a belated 1-year celebration. (He also made me brownies with a 1 candle in them because he’s awesome). Anyway, because now I’m allowed to eat wherever, I decided we were going to Chipotle. I’ve never been, but he loves it and every time he went over the past few months he told me he couldn’t wait to take me there when I can eat food that’s been sitting out in containers like that. I decided Saturday was a perfect time since I could finally eat there again and I didn’t want anything that required getting dressed up or would take too long because did I mention we still had furniture to put together? Thank goodness for a little caffeine because it was not a quick process. Anyway, we headed to Chipotle and it was almost empty which was weird for dinner time on a Saturday. Then we noticed the sign that said they were out of chicken and steak. That didn’t leave many options so we went to a Qdoba down the street. This probably doesn’t seem like a very funny story, but you probably don’t know that the first time the two of us hung out, we went to Ben & Jerry’s for free ice cream day. I had work to do for The Triangle so by the time we got there an employee was standing at the end of the line turning people away because they already had enough people in line to last until closing. Chipotle and B&J are within two blocks of each other. We just have really bad luck with food over near 40th street; apparently we need to start eating in center city more often. After dinner, it was back to the furniture. A few weeks ago I saw a meme that said “You cannot be ready for marriage until you BOTH survived putting an Ikea furniture kit together” and I laughed and liked it on Instagram and didn’t think anything of it until we were sitting in his room laying out all the pieces for an Ikea bed. We couldn’t find the instructions and it easily could’ve been a disaster. We eventually got a new copy and worked out a system where I read the directions and found the pieces and he did all the lifting and tightening. We survived, and there wasn’t even a single breakup threat (though there were some tense moments). Don’t worry, marriage is the last thing on my mind, I’m just quoting the meme. However, Ikea furniture certainly is a good test of a relationship. So far, so good, I’ve chosen well :) I spent the bus ride home making plans for this week with some friends I haven’t seen yet since they got home from school. Little did I know I’d be cancelling them an hour later. Before I even walked in the door to my house last night, my dad told me that my bone marrow results weren’t good. I misunderstood and thought he meant the results showed it was 2% me and only 98% Susie. I was upset but I’ve heard of that happening before and usually the donor’s immune system takes back over. 2% leukemia? That’s another story. I thought a transplant was a cure. I thought I’d never be dealing with this again. I thought getting my port out was the next step, and I was upset last week when they were scheduling my next appointments on days that were going to interfere with my normal life schedule. Turns out that was a silly thing to worry about because I have another new normal on its way. What does all this mean? How did this happen? Remember how I said the doctors wanted a little graft vs host disease but not too much? Well I didn’t really have any and nobody seemed too worried. I did wonder at the time if that was a bad thing but I was thankful to not be on extra pills or anything and I stopped worrying eventually. Anyway, they like that little bit of GvH because it’s a sign that the donor’s immune system is also attacking residual leukemia cells that made it through all the chemo and radiation. As the doctor said, leukemia cells are tricky. It’s possible that Susie was such a good match that the residual cells tricked her immune system into thinking they were normal, just like they tricked mine. It’s also possible that she’s been fighting them for me for the last 6 months, but the cancer finally tricked her too. Either way, it’s obviously a problem. Does this mean the transplant failed? No. I’m still all her. She took over and I know her immune system can help me through what’s next with a little help from the doctors. I hope she never thinks that she did anything wrong, that this is her fault, or that she’s anything less than my hero. I don’t think she knows much yet since we don’t know much either but obviously she will once I’m back at Hopkins a lot. Today we went to meet with the doctors to discuss what’s next, plus they did another bone marrow aspiration, this one to send to Seattle for some other tests. I had them use the other hip, so maybe that will help. Even though I only found out last night, the doctors have been working on this all weekend, making phone calls and sending emails, warning my nurses so they weren’t terribly shocked when they arrived this morning. Anyway, there are quite a few options but a lot of them are clinical studies which have a lot of controls that must be met. There are the obvious criteria, like you can’t be going through any other trials at the same time and you can’t be pregnant and other things that could really affect the results. They also have levels of leukemia that qualify you to participate. More on that later. A few years ago, I would have gotten some white blood cells from Susie in an attempt to give me GvH and also have the graft-vs-leukemia effect. GvH does not sound like a fun time, and it has some long-term effects. Not major, but irritating, like dry eyes and dry mouth. Apparently this method either works really well or doesn’t work, and its efficacy for ALL (my type of leukemia) is lower than for other types of leukemia. So what are the other options? There’s a trial of a therapy called GNKG168. It’s still in phase 1 trials which is early in the medicine testing process (obviously, since it hasn’t gotten a name yet). It is an immune-modulator and it’s unclear to me how it works but the expectation is that it would help keep my level at or below the current 1.8%. The GNK gets infused 5 days in a row for an hour each day and can be repeated every two weeks if necessary, up to (I think) six times. Since it’s such a new drug it’s tough to know what the long-term effects would be. As with many medicines, this one lists secondary cancers as a side effect. Isn’t this fun? They don’t expect this to be a cure, but they hope it will buy us some time. Why do we need time? It seems ridiculous to walk around knowing I have leukemia in my bones and just trying to keep it from growing. However, there’s a more promising treatment (also new, and apparently in the news recently so you might have actually heard about it) called CAR T-cell, which attacks a specific protein on leukemia cells. They would take some T-cells from me (they’re a type of white blood cell) and genetically modify them to attack that specific protein. This is a targeted therapy that doesn’t have as many nasty effects as chemo, though it is still in trial as well. Hopkins doesn’t do this therapy – I would have to go to CHOP (Children’s Hospital of Philadelphia) or NIH. The NIH study is currently closed, but my fellow is working there right now and is trying to find out if it will open back up soon. The CHOP study requires 5% leukemia, so as my mom put it, I’m not sick enough for that one. If the NIH study does not open back up, the doctors would let my number get that high so I could be part of the CHOP study. NIH doesn’t have a level limit. We also need to find out how taxing this treatment is. If I can attend school while doing it, CHOP makes a lot of sense. We will need to make this decision soon so they can collect the cells and begin modifying them. They can start modifying even if my level isn’t at 5% yet. There’s a wait list for this therapy though, so the sooner we start things the better. Meanwhile, I’ll probably be getting the GNK to keep my numbers in check. As it turns out, most people who have post-transplant relapses have much higher percentages (like in the 30s and above). If my level ever gets that high, which I hope it doesn’t, there are a lot more studies and options available because that’s more common so there’s more research about it. A lot of those treatments involve more intense chemo, while the targeted options in the current plan do not. Right now, my level is low, but my doctor said that’s like being “a little bit pregnant.” If left alone, it’ll continue to grow, which is why they need to start the GNK to keep it low. After all that, if there is still residual leukemia, there’s a possibility of another transplant. Remember in the fall when I thought getting a transplant was the scariest thing ever? Now getting another one is even scarier. So is signing off on all these experimental therapies, but that’s a different issue. A second transplant might be necessary to get yet another immune system to try to attack any residual leukemia. Certainly we are all hoping the T cell therapy will cure me and another transplant isn’t necessary. Even if it is, they wait at least a year (so until December) because transplants are tough on the organs. They can do reduced-intensity transplants, but those aren’t nearly as effective (if I got one next week – so without any of these trials and without getting me into remission first - the doctor estimated a 20% chance of it working). Luckily, there are all those other options because I don’t like those odds. The good news is I’m still feeling great and generally have a lot of energy so I hope that means good things for my organs. This update has is longer than my final paper for the class I took this quarter and it got me all the way to page 73 of my blog document. Thanks for all of the love and prayers these past 24 hours! If you have any questions, let me know but I may take a bit to reply – I do have a final to take and another appointment at Hopkins tomorrow. If you want to read more about the clinical trials, check out www.clinicaltrials.gov and let us know if you think of any questions we should ask in our next meeting with the doctors. I’m sure you have better things to do, but my mom put the info in her email update so why not include it here too? My bone marrow doctor had to leave the state unexpectedly so we don’t know when he will be back for us to talk to him, plus we have to wait for the results from Seattle to move forward. We really don’t know when anything is going to start; it’s a waiting game right now. That’s all I’ve got for the moment. If you’ve stuck with me to the end of this update, I’m impressed and I love you! If you’re angry or frustrated, I completely understand. I suggest getting a Dammit Doll. As of tomorrow, my transplant was 6 months ago. Isn’t that crazy? Since I was never on any immunosuppression after my transplant, this marks the end of my food rules! Now I can have berries, frozen yogurt (hence the title of this post), drinks from dispensers, Chinese takeout, salad and food from buffets! I’m sure there’s other stuff that I’m forgetting but those are some of the big ones. Fewer rules makes it a lot easier to visit Drexel, which I’ll be doing again this upcoming weekend! Last time I wore extra clothes and a mask on the bus – this time my doctor said neither is really necessary, but I might wear my mask just to be safe if it’s crowded. Around 6 months, I also need to get all of the heart and lung function tests again. Last time there was a slight issue with my heart but they weren’t too concerned. Just in case, I have an appointment to see a cardiologist in a few weeks and the other tests are are scheduled for my next visit. I had my bone marrow and spinal tap on Tuesday afternoon which went well. I don’t have the results yet (hopefully still no evidence of patient) but I should by next week. The Versed didn’t knock me out for the entire day which was nice. I was functional by 4:30 (compared to some past experiences where I’d sleep through dinner) so we went out to dinner at a Hibachi grill in celebration of the end of the food rules. Once my bone marrow results come back, they can schedule the surgery to remove my port. My doctor wouldn’t schedule it before the bone marrow aspiration because she’s superstitious. Since I can swim/shower/really do anything with it, it’s not bothering me too much. I’m not looking forward to the surgery because it was really painful years ago coming out and it was painful going in last fall. However, my nurse mentioned that she’s seen people get line infections so bad that they’ve ended up in the PICU and died. Okay, my port can come out anytime now! My hair is getting really long and as it grows it looks more and more frosted. When it first started growing it looked really blonde but it’s gotten darker so the tips look really light. It’s not as dark as it was before though! When I was at Hopkins the other day, I was talking to one of my nurses with my back toward the nurses station, where the other nurses were arguing over whether it was me or not because 1. My hair was so long for only 6 months out and 2. They had only seen me with really dark hair. One of the receptionists even said to me “I have to get used to you with hair.” I usually wore the same hat to clinic and she always said “Hi Karen” when I signed in. Now it always takes her a second. I’ve been really busy since my last post doing lots of normal things! It’s been great! After my weekend in Philadelphia, I went to Massachusetts the next weekend for my cousin’s graduation. It was great to see everyone since we haven’t been up there in two years. We went to both the pinning ceremony and the graduation and by Saturday afternoon we could call Annabelle a nurse! Congratulations! The food at her graduation party was perfect for her degree – jello shots, pill cups, specimen collection containers, thermometer popsicles, and of course a cake with a normal heartbeat around the side in icing. Even the dogs were dressed for the occasion! While we were in Massachusetts, we also got to go to my other cousin’s soccer game and hang out on the playground. During the game, I noticed a coincidence I couldn’t ignore: my cousin is 5 years old and she was #24. That day happened to be 5 years since we lost my friend Amanda, also a soccer player whose favorite number, birthday, and jersey were always 24. Thanks Amanda for watching over me and my other transplant friends the past few months. Actually, today is one friend’s day 100, and another friend had hers earlier this week. It’s exciting for me to see people reaching these milestones and getting to go home – I remember how excited I was and of course I’m proud of them for kicking cancer’s butt! For Memorial Day weekend, I headed to North Bay for SunSibs, a weekend camp for kids whose siblings had or have cancer. I’ve gone to Camp Sunrise for years now but I’ve never gotten to be part of the siblings weekend, which Susie went to for the first time last year. All of the staff arrived Friday (yes, that was a miserable drive on a holiday weekend) for orientation and the campers arrived Saturday morning. I was on activity staff, running newsletter. Each day when the campers come to my activity, they have a chance to write anything they want and see it published the next day. Some kids conducted polls, going around asking their fellow campers about their favorite activities or crazy would you rather questions. Others wrote stories, drew pictures, or submitted gossip. At breakfast each morning, the campers would find the previous day’s submissions on their tables in The Sibs. I run the same activity at Camp Sunrise and there always seem to be extra copies so I only printed about 3 per table. For the first time, people came up to me asking if I had any extras! I printed more the next day. The weekend was a lot of fun, and the campsite has a gorgeous location on the bay so we had a campfire on the beach at sunset. Everyone got to participate in the adventure activities including the zipline and the huge swing, which was a new experience for many campers and counselors alike. I enjoyed meeting so many new people and seeing how different SunSibs is from Sunrise. My bunkmate was one of my nurses, which made my other nurses at Hopkins a little jealous. The busy weekend was a little much for me – even though I’d gotten enough sleep all weekend, I slept for almost three hours when I got home. Drexel runs on the quarter system and the spring quarter is just finishing up. I’ve completed all of my work for the one class I took this term except for the final exam, which is due next week. I won’t be taking another class during summer term because I’ll be busy with my internship and other summer activities. Since I still have more credits than I need even with the term off in the fall, there’s no reason to be stressed over the summer. I’ve been having a lot of fun at Cool Kids doing everything from designing flyers to working on social media campaigns to making care packages. There are fewer major events now than in April but there’s a running festival coming up at the end of June. If anyone is looking for a family-friendly 5k or a 1-mile fun run, check it out! Last week, Cool Kids got tickets to a prescreening of The Fault in Our Stars, so nearly 100 patients/families/friends went to that. The movie was great and followed the book really well! I’ll probably write more about that in another post but since the movie doesn’t come out to the general public until tomorrow, I’ll wait! If you haven’t read the book yet, I highly recommend it! Some cancer books are incredibly unrealistic but I could really relate to this one. Last weekend, I biked for almost seven miles with my family. By the end, my legs were really tired even though it was pretty flat but I guess that’s to be expected since I haven’t biked since last June. We were biking near the campground that we had been planning to stay in for Labor Day weekend until I ended up in the hospital. As it turns out, the campground is really nice but it’s close to a major train switching yard which is really loud. Maybe it’s better we realized that now. Our pool is finally a good temperature for swimming! We’ve been planting lots of flowers and getting ready for summer parties and days by the pool. If anyone wants some hosta or lily plants, let me know! We have multiple kinds of each. Also, we can’t eat the amount of rhubarb that our plants are producing, so if you want to make a rhubarb pie, don’t bother buying it at the grocery store. I think that’s about it for now! I’ve broken almost all of the food rules in the last two days: I’ve had salads, drinks from dispensers, blueberries, and a snocone! I’m sure I’ll continue to enjoy my food freedom. I’m looking forward to my weekend at Drexel and all the nice weather ahead. The rest of June also includes a crab feast and maybe a Relay for Life, plus lots of time with all of my friends who are home for the summer. It’s been so good to see so many people in the last month and I’m hoping to see many more over the next few weeks. To my Drexel friends in class right now: good luck with finals and co-op interviews! To everyone else: I hope you’re enjoying your summer! |
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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