I’ve been putting off writing this extremely long blog post about my experiences at CHOP because there’s so much to say that it’s a little overwhelming. We have a meeting with the doctors tomorrow (Tuesday) to discuss the results from last Wednesday’s bone marrow test, so I was planning to update everyone after that. However, my doctors at CHOP don’t believe in holding back good news: on Wednesday night (yes, the day of my bone marrow aspiration), the doctor in charge of the study called to tell me that the first two tests had come back clear. Friday, just as I was nearing the end of an excessively long midterm, one of my other doctors called to say that my bone marrow was MRD negative, which means there was no evidence of disease! I almost didn’t answer the phone but I had lots of time left on my test so I decided it was okay. Go T-cells! It was definitely easier to have a relaxing weekend knowing the results. But how did we get to this point? My last update was super short to let you know I was doing okay, but now I have more time to be a little more descriptive. I got my cells on September 23rd. I’m the first patient in this phase of the study, so there were lots of people there during the infusion to make sure that all of the paperwork was filled out correctly. I’m not actually sure how they were all related to the study. Coordinating the time of the infusion was quite a process – the cells had to be defrosted by the lab and delivered to me, where they had to be infused within a certain amount of time so the lab had to know when there was a room available for me in clinic, when the doctor was available for the infusion, and when everyone else could be there for paperwork. Luckily they didn’t need me for that coordination because I was given Tylenol and Benadryl before the cells to prevent a reaction. They had written for 50mg of Benadryl but we begged them to only give me half because I’m so sensitive. 25 was plenty – I was struggling to answer the doctor’s questions. He went through all the possible side effects again and listed some of the medicines they use to deal with them: morphine, adavan, etc. He was shocked to learn that I’ve never had these but was glad I told him so he could put a note in my chart to start me at a low dose if I needed any of them. The actual cell infusion was pretty uneventful, just a push over 2-3 minutes. The preservative in the cells is apparently the one thing that the body clears by breathing rather than through the usual methods like urine or sweat. I got a terrible taste in my mouth as the cells went through my line (like tasting saline but way worse) and then my breath smelled like it for hours so I was constantly smelling it. It made me a little nauseous but I never threw up. After a two hour observation period, we went back to the hotel. Phillip came over and after sitting next to him on the couch I was very cold when I got up. My mom insisted it was plenty warm in the room so we checked my temperature. The Tylenol had worn off and I had a low fever (upper 99s). I thought for sure it would get higher later that night and I’d end up in the hospital but it didn’t. The next day I had another appointment at CHOP. My temperature was back to normal but my heart rate was really high so I got fluids and two units of blood. Blood transfusions are another thing they do differently there. Whether I’m getting one unit or two, it runs over 2.5 hours. At Hopkins, each unit runs over 2 hours if I remember correctly. My parents switched because my mom didn’t want to be there for the fever/potential PICU time which we knew could happen anytime. I think she was a little too eager to leave because she got a call on her way home that Matt may have broken his nose at practice so they spent the evening in the ER at home. Luckily it wasn’t a bad break, if it was broken at all, and he went back to playing soccer the next week. I felt much better after the blood, so we went out to eat. I actually enjoyed my food for the first time in a while. I had convinced the nurses to leave my port accessed since people had been having so much trouble with it, which meant I had to come in the next day to get it flushed and get new heparin. My next appointment wasn’t until Friday but the flush on Thursday didn’t take too much time and saved my chest some needle holes. I seriously look like a pincushion. We were barely there for half an hour, and I swear almost half of that was in the elevators. They’re painfully slow and inefficient, especially compared to the new ones at Hopkins. Even though one of those always seems to be broken and they serve twice as many floors, they’re much faster. I went back the next day (Friday) and got more fluids because my heart rate was high again. I’d been drinking a lot, but I switched from water to juice for the calories which gave me diarrhea and ended up being counterproductive in terms of fluids. Unfortunately, I had to be deaccessed because I couldn’t predict the future to know that my fever would spike the next day. My dad took me to a new park almost every day to walk around. Some days we’d spend more time driving to the parks than walking, and we always spent more time resting than walking, but it was nice to be outside and good for me to get some exercise. On that Saturday (September 27), we went for a nice walk along a river. When we got back to the hotel, my dad started to make us ramen for lunch. As soon as I smelled it, I was more nauseous than I’d been the whole time I was at CHOP and I knew something wasn’t right. Sure enough, my temperature was up to 101.9. We packed our stuff and headed to the emergency room. We got to a room pretty quickly which was good because I was feeling worse. I had been planning to take a nap right after lunch but I didn’t get my nap or my lunch. I was hungry and exhausted and had a high fever, a combination that led straight to a migraine. The nurse accessed my port without trouble which was a plus and my dad and I watched some interesting shows on the food network, which happened to be on in the room. It was fairly efficient for an ER visit – they had to give me three antibiotics before I could move up to oncology and I was moved as the third one was finishing. The weird thing was that they didn’t start any of them until after I answered a bunch of fairly random questions, including our personal favorites: do you wear a helmet when you ride a bike? Does your house have a working smoke detector? Does your house have a working carbon monoxide detector? As you can see, those are all very relevant to whether I can get my antibiotics…not. We later learned that these questions are usually saved for the nurse on the floor once you’re admitted so that was just a special case. The other weird thing about the CHOP emergency room is that they don’t have IV poles. The nurses say patients take them to other floors and they never get them back but it still seemed ridiculous. When I get a liter of fluid in an hour, I’m going to need to pee and the hook above my bed that’s holding my antibiotic isn’t going to move with me. I went to sleep almost immediately after moving upstairs to the oncology floor because I knew it was the only way to get rid of my headache. The next day, I asked about leaving my room to walk around the floor because I’d been working so hard to build up my strength that I didn’t want to lose it. My nurse told me that I wasn’t allowed to leave my room, except to go to the playroom at a specific time each day. All AML and relapsed ALL patients are at higher risk, so they need to stay in their rooms except the hour they can hang out together in the playroom. I was so upset; they didn’t care about my ANC, the fact that I was going to wear my heavy mask or anything. It was just a broad generalization. The nurses would come in my room and leave the door wide open while they hung my meds, but I couldn’t step out into the same air they were letting in my room. I pointed this out and my nurse shut the door, but she left it open again the next time she came in. At Hopkins, they frown upon people standing in the doorways keeping the doors cracked a foot open because the rooms are all pressurized and HEPA filtered. At CHOP, the door to the hallway doesn’t actually go all the way to the floor so the hallway noise (and air) comes in. I was on a pretty quiet part of the hall so it wasn’t bad but it was certainly a change. A lot of patients actually left their doors open all the time. There are two inpatient oncology units. The one I was on had 25 rooms (including a room 13 which Hopkins omits) and I’m not sure how many the other unit had but it was at least 25 more. My room was huge and it was a rectangle instead of a bizarre shape! There’s only one room at Hopkins that’s bigger than the CHOP rooms. They have smaller televisions at CHOP but I don’t really watch tv, and there is a computer in every room for patient/parent use. The bathrooms had real bathtubs instead of the showers that soak the whole floor. Overall, it was a nice room but not somewhere I wanted to be confined for who knows how long. On the second morning, we asked the doctors during rounds why I wasn’t allowed to leave the room. They looked at my ANC and said they thought I could leave but they’d double check. Sure enough, I could walk around. In case anyone is curious, a lap around that floor is also 1/15 of a mile even though it has more rooms. I was inpatient until Thursday afternoon. Throughout the week, my symptoms included fevers and headaches but nothing crazy like we were expecting/dreading. My fever got pretty high one day but not as high as some patients have gotten. I would get Tylenol to bring the fever down and within an hour I’d be extremely hot and sweaty as the fever broke. I’d have a few hours of comfort before the headache would come back, followed by the fever again. It wasn’t a lot of fun, but it wasn’t nearly as bad as I was expecting. The doctor even came in and said this is when people say they’re not sick enough for it to be working. However, they have to freak everyone out with all the potential side effects because they are real possibilities. People with very little disease going in tend to have fewer side effects, and in theory the month of chemo I had at Hopkins plus the week at CHOP should have brought my disease level pretty low. While I was inpatient, we walked a few laps, played a lot of Rummykub, and hung out with our visitors. Phillip came to visit a few times, and brought my friend Alicia one day. They did the Cupid Shuffle in their Karen shirts (that’s how big my room was!) which gave us a good laugh. I’m tagged in the video on facebook if you’re interested. Some of my extended family stopped by another day since they had an appointment at CHOP and it was great to see them since it had been years. My aunt came to visit the day I got to leave and brought me lots of candy to try to fatten me up (it hasn’t really worked yet unfortunately). A group came in one day to give manicures to the patients and haircuts to the parents. I got a manicure and I also had them shave off the few hairs remaining on my head so my hair will be even when it comes back. After we got back to the hotel, I continued getting low fevers at night sometimes but they weren’t high enough to go back to the hospital. I didn’t have another appointment until the next Tuesday so I made sure I drank enough all weekend so my heart rate wouldn’t get too high again. I spent a lot of time catching up on the homework I didn’t do while I was in the hospital and two of my friends from Drexel came to hang out one day. We sat outside enjoying the nice fall weather. My mom and Susie came up on Sunday and we went to a park and walked around before playing some games and going out to dinner. My dad took Susie home and my mom was back for the rest of our stay. My Tuesday appointment went well and they told us we could go home the next Tuesday as long as things continued to go well! On Tuesday night, my low fever was back but it was higher than usual – 100.6. CHOP doesn’t require a trip to the ER for that; they look for 3 fevers 100.4 or higher within 24 hours but taken at least 2 hours apart. A few hours later, my temperature was 100.4. My fever was gone in the morning but by the afternoon it was back to 100.4. I felt fine but that was still 3 readings in 24 hours so we followed the rules and called. We went to the emergency room because we called just a little too late to go in to clinic. My fever was gone by the time we got to the ER but I still got an antibiotic. They decided to be conservative and keep me overnight. That’s right, one night was conservative. Apparently if patients come in with a normal ANC like I had, they consider giving an antibiotic and then sending them home. They wanted to make sure my fever was still just my body getting used to my cells so I was there until Thursday afternoon. At Hopkins, a fever, even if it’s gone by the time you get to the ER is an automatic 48 hour minimum admission. When I went from the ER to my room for my first admission, I was wheeled in a bed and had a blanket over my head to block the light because of my migraine. This time, I opted to walk. At Hopkins, the transport people have to take you through a bunch of card access only hallways but at CHOP they just take you through the main halls. I can’t imagine how tough it is to wheel a bed at peak hallway crowding time! We were on the other oncology wing that time, and our room overlooked the main atrium. Great people watching but it wasn’t particularly quiet. That room was much smaller, more comparable to Hopkins, and the bathroom light was automatic which sounds handy but not in the middle of the night when the nightlight is plenty bright and the real light is blinding. I was glad we only had that room for a night. After that, we decided that we weren’t going to check my temperature anymore unless I really felt bad. That was October 9th and I’ve only checked once since then. Over the weekend, we had some visitors to help pass the time. My friend Claudia and her dad came to visit and it was great to see them outside of the hospital. They brought us some sandwiches which are apparently amazing for chemo-damaged taste buds because I ate a lot more of that than anything else at the time and they said Dale was the same way. A friend we met at the CJCF family getaway weekend stopped by on Monday morning and again it was nice to catch up. My mom and I went for a walk almost every day in a nearby wildlife refuge. There were a few different paths short enough for me and most of them had benches as well. Depending on the time of day, there were different birds on the water. On Sunday’s walk, I was really tired and kept sitting on the ground because I couldn’t make it from bench to bench like I had a few days earlier. My heart rate kept getting really high even though I knew I had been drinking enough. For my weight, enough is about 10 cups a day. That’s a little more than 2 liters which is a lot of fluid! I usually do a pretty good job of keeping up but I definitely have to pay attention so I’m not drinking three cups right before bed because then I wake up to use the bathroom way too much. Anyway, I was still really tired after our friend left on Monday so we decided to go to clinic to see if I needed blood. My counts were okay but my doctor decided the symptoms were enough to give me a transfusion. She ordered two units, and while we were waiting for the blood bank I got my monthly IVIG infusion. That gives me the antibodies that I’m not producing anymore by myself because my t-cells kill my antibody-producing b-cells. I don’t get a flu shot because I can’t produce antibodies but if you get a flu shot and then donate blood, you’re giving someone the flu shot. So get your flu shot and go donate blood! Phillip came to visit for a few hours of our 6 hour clinic visit and we played a lot of Spot It. The long, unscheduled clinic visit on Monday meant our scheduled Tuesday visit was really quick and then we were on our way home! Being home has been so nice, as expected. I went to quite a few Glenelg soccer games before the season ended and I’ve gotten to see so many friends when they came home for the weekend. It was nice to be near my Drexel friends for a little bit but it’s even nicer to be home with the whole family (including the cats) and my own bed. Two of my friends ran the Baltimore half marathon as part of Team Cool Kids so I went to cheer them on. It was really cold and it took me all day to warm up. That was the only time I’ve taken my temperature because I’d been cold for so long I was worried I had a fever but I didn’t and being cold was worth it! I had a lot of fun cheering people on as they neared the finish line and it was great to see everyone from Cool Kids. It was amazing how big the team was – not only did all those people run way farther than I could even consider walking in a week right now, they also fundraised a lot of money for a great organization! What else am I doing to stay busy? My classes have been taking a lot of my time as I prepared for midterms last week. I go for a walk most days and I’ve also gone shopping and apple and pumpkin picking. We went to a family party yesterday which was a lot of fun because we hadn’t seen some of the people there in years. Plus the food was really good! Today, I signed up for classes for next term and I can’t wait to be back at Drexel (assuming the doctors okay that, but I don’t see why not). Half of my classes are online to give me flexibility and less walking to class and I have at least one class-free day that I can use for appointments whether those are at CHOP or Hopkins. My dad and I have a meeting with the doctors tomorrow to discuss the results of the tests (even though they called to tell us they look good) and explain how the follow-up works. I know I can get the IVIG here at Hopkins, so I will be going in there in a few weeks for that. I can’t wait to be back with the nurses who really know my port, though they have gotten better at CHOP. I’ll let you know what we learn in the meeting in my next update! Until then, thank you so much for all the thoughts and prayers – keep them coming that these modified cells keep reproducing and killing everything bad! Thank you for the food, for helping get Susie where she needed to be, for the calls/texts/messages, for the cards and care packages. I’ve gotten so many great games recently, including Spot It and Bananagrams. My mom and I actually played so many games of Bananagrams in one day that my thumb muscles got sore from flipping the tiles and we had to stop for a week. I’m still working on regaining my strength and will probably go to physical therapy at some point. My numb hands and feet moved on to tingling like when you’re regaining feeling so I thought the end was near. As it turns out, after not feeling for over a month, the nerves don’t know that they don’t need to be so sensitive and my hands just hurt. It’s especially bad if I touch anything and I was even having trouble sleeping because I’d move in my sleep and my hands would rub the blankets and the pain would wake me up. I’m taking a half dose of oxycodone around the clock now which makes the pain tolerable but doesn’t get rid of it. There are a lot of things I can’t do for myself which is frustrating but I’m hoping it gets better soon. My weight is still low no matter how much I eat so I think it’s muscle that I need. My mom promised to keep the Hopkins nutrition lady away from me because she knows I’m trying. Other than that, I’m doing great! Sorry this update took so long to post (and read, I’m sure)! If you made it all the way through this, you rock!
2 Comments
This isn’t going to be one of my long, involved blog posts because I have homework to do and naps to take but I wanted to update everyone a little bit since I’ve been MIA for a lot of the last two weeks unless you’ve contacted me directly (and even then, I’m terrible at replying so I might not have gotten to that yet…).
Last Tuesday, I got my modified t-cells! The actual process was pretty uneventful but as it turns out, I am the first person in this phase of the study, so there were a lot of study people there to make sure that all of the paperwork was completed correctly. That night, my temperature was already rising but it stayed around 99.5. During the day, it would be normal and in the evenings it would rise again, but not high enough to send me inpatient. My parents switched places on Wednesday which meant my dad was the lucky one who got to take me to the emergency room on Saturday. We had gone out for a walk and when we got back my dad started to make lunch. The smell of it made me feel absolutely terrible and I realized I was very cold and just didn’t feel good. 101.9. Off to the ER we went. Between the fever, my lack of a nap (I usually take one after lunch), and a lack of food, I had a terrible migraine for most of my time in the ER, but it went as smoothly as possible otherwise and I moved up to the oncology floor about 5 hours later. There are quite a few interesting differences between CHOP and Hopkins but I’ll save those for my more detailed post. The week was pretty uneventful – lots of sleeping, drinking, Rummykub, and forcing myself to eat. Every time my temperature got above 100.4, I’d get Tylenol, which would make me sweat like crazy half an hour later when it broke my fever. Right before the Tylenol wore off, I would get a headache as my fever would start to come back. The fevers and the really sweaty uncomfortable times when my fever broke were actually the worst part of the week. The doctor in charge of the study came in at one point and said this is when people start saying “My kid isn’t sick enough, it must not be working” but really it is just a sign that all the chemo did its job and the t-cells didn’t have too much leukemia to attack so my body didn’t have a ridiculous reaction. They have to tell you the scary side effects and freak you out, but not everyone gets them. I am definitely glad I went into it scared because it really was much better than I expected – no visit to the PICU! On Tuesday night, I took some Tylenol before bed, and when I woke up in the morning, the fever was still gone! The doctors told me if it didn’t come back by the next day (Thursday), I could leave. On Wednesday night, my temperature went up, but not quite to a fever and it went back down within a few hours. That made the doctors hesitant to send me home in the morning, but they told me if I stayed fever-free until 4pm, I could leave. My aunt came to spend the day and Phillip and my friend Alicia came to visit (in their Karen’s Crusaders shirts!) so the day went by pretty quickly. They all encouraged me to eat and walk laps, and Phillip and Alicia did the Cupid Shuffle in their t-shirts (yes, there’s a video). My friend Lauren sent me a picture of herself wearing her t-shirt after her 10k over the weekend and my friend Amanda sent me an adorable kitten selfie with hers. I have all the Philadelphia shirts and my mom is working hard to distribute all the rest to everyone who has paid so far. I can’t wait to see more pictures! Anyway, I was still fever-free at 4 so we got to head back to the apartment! It’s so nice not to have vitals and to have more flexibility than the hospital menu and the walking-distance restaurants. I don’t go back to clinic until Tuesday, and by that point they might have the results from some of the study labs to see what’s going on. This update wasn’t as short as I imagined it would be but trust me, the real one will be much longer, with lots more random funny stories! Thanks for all the thoughts and prayers and love over the past few weeks, I couldn’t do this without you guys! |
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
Categories |