Actually, I don’t buy bananas at all because I don’t like them but that’s not really the point. Over the past week, the plan has changed at least once every 48 hours and the song Green Bananas popped into my head as I started to write his update. Every time I try to plan even a day ahead, part of my plan gets changed. I’ve only heard the song a few times but that line always made me laugh, though looking at the lyrics this morning I realized the song is much sadder overall than I thought. Anyway… I posted my last update right before I left for camp. I’m so thankful that I was able to get away for a week and be around such an inspirational group of patients and survivors. Under the Sea was a great theme for activities and I love our shirts – thanks Muriel, I hope you were happy with the way the week turned out! One night, we took a field trip and had the aquarium to ourselves for three hours. One of my friends was actually in Baltimore that night and tried to go to the aquarium but couldn’t. Sorry! I’ve already been twice this year when I was living in Baltimore in the winter but it was still a lot of fun! For the second year in a row I was in charge of an activity called Newsletter, where the kids can draw pictures, write stories, interview each other, and (most campers’ favorite) gossip! Each night, I put all of the submissions together, along with photos from the day and games/fun facts related to the theme, into a newsletter which is on the tables the next morning at breakfast. Even though the activity staff was smaller than usual this year and therefore stretched a little thin, they were incredibly understanding on the few days that I just needed a nap. Cabins have an hour rest period each day, but activity staff frequently spends these periods getting ready for afternoon activities or taking the opportunity to try out the other activities – climbing the rock wall, painting pottery, and tie-dying for example. I made it almost to the top of the rock wall, which I was happy about since I haven’t done anything like that in more than a year. Also, shout-out to the amazing Morgan for letting me sleep in but waking me up just in time so that I didn’t miss breakfast! You rock! After about a day of catching up on sleep, I got to hang out with one of my best friends before I headed to Hopkins and she headed to school a few days later. My family also joined some of our neighbors for cornhole and crab cakes, which was a great evening before we checked in to Hotel Hopkins on Monday. We were a little late to our appointment because I hadn’t finished unpacking from camp or started to pack for Hopkins, and choosing food to bring with me was difficult when, as I told my parents, just the idea of being in the hospital makes me lose my appetite. Clinic was crazy (but the people-watching was great!) and my spinal tap was hours late so we were glad we didn’t rush. I headed to the inpatient side of the 11th floor in the early evening, though I don’t remember it thanks to the Versed. I received a few other chemos hours later. One of them is red, and when I had it during my first treatment, I was asleep. I woke up and went to the bathroom before anyone told me my pee would be pink, which really freaked me out! This time I knew what to expect, and within 15 minutes of getting the drug my pee was a nice grapefruit pink. I didn’t expect the effect to be that quick! I took a picture because the green pee was such a big hit in the fall, though it looks more orange in the picture than it did in real life. My chemotherapy plan is outlined by day. Since I didn’t get my chemo until 10pm on Monday, day 1 ran until 10pm on Tuesday. The drug I was supposed to get on day 2 can cause allergic reactions so they like to give it during day shift when there are more nurses and doctors on the floor so they decided they were going to wait until Wednesday morning. I was a rather annoyed that I was wasting a day in the hospital but two of my friends from camp braved the terrible rain and flooding (I hope none of you reading this had any significant damage!) and came to visit which made the day a lot better. My doctor came in to see how things were going and to deliver some news: CHOP (Children’s Hospital of Philadelphia) called. They wanted to see me later that week to do a bone marrow aspirate and biopsy and a spinal tap, along with a lot of other bloodwork because they have a space in the CAR T-cell study sooner than they expected. The December estimate that I’d been given before was for the study that CHOP is running, which does not have a 5% blasts requirement. The other study is also at CHOP but is sponsored by a drug company and just opened their Phase 2. It has a 5% requirement at the point of enrollment and is the CAR T-cell study that was recently classified as an “FDA breakthrough therapy.” My doctor wanted me to go up as soon as possible, before the day 1 chemos had a chance to do too much, because at this point having more than 5% blasts meant getting my modified cells back earlier. CHOP asked that we stop all chemo/steroids because of the study, so while the doctors at both hospitals figured out the rest of the plan, I sat at Hopkins on fluids. When I say fluids, I mean lots of fluids – more than 4 liters a day! They didn’t want to send me home until they had a plan, plus they were still watching my labs closely for any signs of tumor lysis (breakdown of lots of cells from the chemo). I had a few more visitors (thank you, thank you, thank you!) and played card games with some nurses and another patient on the floor who is around my age. I also did a bunch of work for Cool Kids, which was great to keep me busy. On Thursday afternoon, the doctors finally let me leave, with plans for an 8:30am appointment at CHOP on Friday and an appointment back in the Hopkins clinic on Monday (tomorrow). My experience at CHOP this time was much better than a few weeks ago. They’re not used to people asking to do procedures on the floor so they were very hesitant when I insisted I only needed a little Versed and I’d be asleep for the whole thing. They agreed to try it, but told me I couldn’t eat or drink anything just in case they needed to give me something stronger. After getting up at 5:15am to drive to Philadelphia, I was pretty hungry while we discussed the 24 pages of study information with the doctors. I learned a lot more about the cell modification process and the expected side effects. I don’t have the paper in front of me right now so I’m probably forgetting some stuff but even the short version is going to be long. To modify the cells, they insert a virus with some DNA that makes the cells attack the CD-19 protein which is on my B-cells (including my leukemia cells). The virus is actually a stripped down version of HIV, which takes advantage of some of its properties without giving me the bad parts of HIV like the contagious part. They grow the cells until they have the right amount for my body size and then they run a lot of tests to make sure the cells are safe. This whole process takes a few weeks. I’ll have a few days of chemo when I first get up there to knock down my leukemia a little more. The less I start with, the less there is for the T-cells to attack, which means less stress on my organs from the dying cells. Like a bone marrow transplant, getting the cells isn’t very exciting. I don’t even need to be inpatient for it! They’ll watch me in clinic for an hour or two to make sure I don’t have an allergic reaction and then I’ll get to leave. Within a few days, I will get a very high fever, like 104+, and feel achy and overall awful. Most people compare it to a terrible case of the flu. Some patients have trouble maintaining a good blood pressure, and the medicine to fix that can only be given in intensive care. So far during all of my treatments I’ve avoided the PICU but I’m mentally preparing to have to go this time around, since my blood pressure runs low already. Some patients have needed IV nutrition and others have needed oxygen or even ventilators. Some have a lot of stress on their organs and need certain drugs to help them. A few patients have had hallucinations or confusion that can last up to a couple days (they think this is related to all the proteins breaking down) but luckily aren’t permanent. Hearing all of these potential side effects is absolutely terrifying, but it’s certainly better to be prepared and go in knowing what kinds of things to expect. I can’t imagine being one of the first couple patients. CHOP has only done about 35 of these therapies which isn’t many in the grand scheme of therapies so there is a lot left to learn, but they know a lot more now than two years ago! As I learned from my transplant, it’s nice when things are easier than expected but sometimes that means things aren’t working as well as they could. The fever/flu tends to last 1-2 weeks and then I should be able to be discharged. I originally heard that I needed to live near CHOP for 6 weeks, but on Friday they said to expect 4. The last two weeks I could go home since I live fairly close (not across the country), if I’m doing well, and make the trip to Philly twice a week. After the 6 weeks, most of my tests can be done from Hopkins but I will still need to go to CHOP occasionally for bone marrow checks (and I’m sure Hopkins will do some of their own as well). I should have an expected treatment date from CHOP within the next week, and from there I will have to figure out how that affects my classes and internship. The date will also determine what drugs Hopkins gives me in the meantime. Some medicines can’t be given 4 weeks before I receive my cells while others can be given up to a week before. Now that I’ve explained what to expect, I know the big question remaining is how likely is this to work/be a cure? That’s anybody’s guess at this point. It works for at least a little bit on most people, but not all – the cells haven’t grown in a few patients. The therapy is new enough that the first patient only received her cells back 2 years ago. She is still in remission and still has CAR T-cells in her blood which is great news. Most of the other patients are still in remission as well, though they aren’t nearly that far out from treatment. The few people that have relapsed have been for 2 reasons. The first reason is if their T-cells don’t last. There isn’t a way to predict who this will happen to, but they can tell from bloodwork when this is starting to occur and then they consider other options while the patient is still in remission (no evidence of disease). The second reason is if the leukemia finds a way to hide from the T-cells by no longer expressing the CD-19 protein that they are trained to attack. This way is even harder to predict because the T-cells are still present in the blood, they just can’t see the leukemia. My bone marrow aspirate/biopsy and spinal tap at CHOP went well – everyone seemed shocked by how well the Versed worked for me. They had three syringes of Versed to give me if they needed it but I was out after just one. At Hopkins, I usually get to sleep it off for an hour or two but they woke me before an hour was up and told me to go to my ECHO (a heart test). The study needs to be sure that my heart is strong enough to handle a little stress from the T-cells. I also needed a lot of bloodwork to make sure everything meets the study criteria. When I say everything, I mean everything. My nurse somehow combined a few labs so she didn’t need to draw quite as much, and the total was still over 40 milliliters! Normal labs are less than 5, so that was a lot of blood! My hip was pretty sore until the next morning and I was definitely tired from the blood loss but otherwise it wasn’t bad. While my dad and I were on our way home, my mom called: “so two nights at home are good right?” Apparently the preliminary results from the bone marrow aspirate at CHOP showed that I still had a decent amount of leukemia cells so Hopkins wanted to resume chemo as soon as possible to keep the induction as intense as they could. I was disappointed to not have my whole weekend free because I had already started making plans but I enjoyed my second night home and got to see Jenn again before she left for school, which I hadn’t been expecting. I had breakfast the next morning at The Waffle Truck with two of my friends. To my local readers - if you’re ever in Clarksville on a Saturday morning, I highly recommend it. Blueberries and Nutella on a waffle may look and sound a little strange, but it was absolutely fantastic and was the most food I ate at once in days. When I got home, I repacked the few things that I had unpacked and headed to Hopkins. We are in room 3, which overlooks the helicopter pad. Luckily it’s a pretty quiet weekend for helicopters because they’re pretty loud. It’s cool to watch the first few times but then you start to feel sorry for whoever is arriving in a helicopter. Most of the flights we’ve seen this weekend appear to be practice flights – they are a little rough on the landing, they only land for a minute and nobody gets out. I got my day 2 chemo yesterday afternoon, and I’m back on the steroids, nausea meds, etc. that I started on Monday. My counts have looked good overall, except for a big spike in my glucose because they were giving me sugar fluids even though I was eating/drinking enough to keep my sugars up on my own. According to the doctors this morning, the preliminary results from my bone marrow at CHOP show that the leukemia in my marrow is up around 80%. I’m not sure if that is blasts or funny looking cells. The 24% from a few weeks ago was blasts, but some other number in the same test was 42%. I should have a more exact answer in the next few days. Since I’ve been here, my red count has actually gone up, which is good because it was pretty low after the crazy amount of blood CHOP took out of me for study tests. My ANC is just below the normal range at this point as well. Now we sit while they watch my electrolytes. Everything has been fine so far, but my potassium has been slowly rising. This is overall a good thing because it is a sign that the chemo is killing my leukemia. The level is still far from concerning but everyone here is incredibly cautious so I will sit here on fluids for a while and be bored and take sunset pictures. I was really hoping to go home today because I would have to come back to clinic tomorrow for chemo anyway and I doubt much is going to change between now and then since I didn’t get any poison today. I bother the doctors every time I see them about when I can go home, and the attending doctor changes tomorrow so maybe I’ll have more luck with him. My mom and the nurses are lobbying with me. The part that I find confusing is that they say they’re worried about the electrolytes and tumor lysis because the CHOP bone marrow still showed such a significant amount of disease. However, they haven’t done their own bone marrow test in over a month, and on Monday when they did a spinal tap they didn’t do a bone marrow because they said it didn’t really matter. Now that they have information from CHOP, apparently it matters. Hopefully they’ll be satisfied that my counts have stayed stable so far and will let me leave after my chemo tomorrow. It’s so incredibly frustrating to be here when they aren’t doing much for me that I couldn’t do at home (other than take my blood) and I still feel relatively okay. A lot of my friends leave for college soon and I’d really love to be home and able to spend time with them plus enjoy the nice weather. I joined some of the nurses and other patients this afternoon for a few rounds of Spot It which was a lot of fun and brightened the day. Also, thanks to everyone who has played me back in words with friends and all the other online games to keep me entertained! If you’re still reading this, I’m impressed. I know this has been an incredibly long update filled with more medical information than a lot of you care to understand. Imagine having 24 pages of information crammed into your head in less than 2 hours, then being asked if you’re ready to sign the papers. One last thing that I forgot to share in my last post is that my boyfriend contacted a bunch of my friends and my brother and surprised me with a big poster of pictures. There’s a picture of me in the middle and pictures of me with all of them in a collage around it to represent my support circle. I’ve had the poster at Hopkins with me and it’s gotten so many comments – even the cleaning people have stopped to look at it. It’s also much easier to put up and take down than my wall of photos I had for my admissions in the fall. In addition to the poster, they decided on a group name (“Karen’s Crusaders”) and designed a t-shirt (front and back pictured) which costs $15 if they order 30 shirts. Let me (or Phillip if you know him) know if you want one or have any questions. I think that’s it for now! Thanks for sticking with me through this update, and continued thanks for all the thoughts, prayers, texts, dinners and more!
7 Comments
Natalie
8/17/2014 03:30:36 pm
Hi Karen,
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Savannah
8/17/2014 04:29:26 pm
Amazing update Karen. You will get through this storm! Sunny days ahead. Just keep swimming! Love you.
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Shannon Smith
8/17/2014 04:32:23 pm
I would love a shirt and my parents and sister would like one as well! Please let me know where to send size info and the money. I love staying updated on your journey. You're my hero and I hope to see you again soon!
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Karen Shollenberger
8/18/2014 02:25:01 pm
Thanks Savannah! Love you<3
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Karen Shollenberger
8/18/2014 02:29:15 pm
Thanks for always taking the time to read/share/comment on my updates especially when you sound incredibly busy! Also, thank you so much for the thoughts and hugs, hope you are doing well and get a day off soon!
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Karen Shollenberger
8/18/2014 02:32:06 pm
Thanks Shannon! It was great to see you in the winter and I definitely hope our families can work something out once our schedule calms down a bit! Also you guys rock, I'll send you a Facebook message with more info on the shirts :)
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Shannon
8/28/2014 04:20:22 am
Karen!! We love you so much and think about you all the time! Ive been showing Mason and Madelynn pictures and they remember from the July party who everyone is (you, Matt and Susie, as well as the Schimpf cousins from PA). Love the shirts, I think we all need one! I'll figure out who to contact as I don't have your cell.
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AuthorI’m Karen. I was originally diagnosed with Acute Lymphoblastic Leukemia (ALL) in August 2004 when I was 10 years old. When I was working on my college and scholarship application essays two years ago, I wrote about my journey. Although it was a rough few years, it became such an influential part of my life that I can’t, and wouldn’t want to, imagine my life without having had cancer. I called it the worst best thing that ever happened to me. Archives
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