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!
6 Comments
Michael
10/4/2016 05:14:26 pm
I've been following your blog for a while now, and everytime I am amazed at your optimism and positivity. You are truly an inspiration to us all! I hope that your next few weeks are great and pain free! Happy October!
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Berti Coulter
10/4/2016 05:35:12 pm
Wow!
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Ella-Mae
10/4/2016 08:48:05 pm
Always an amazingly strong young woman. You are such a warrior and I'm more proud of you today than the day I met you! 💝
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Irma chazotte
10/5/2016 10:53:12 pm
Good hearing from you. Sounds like you're in good company and lots is going on! Keep smiling!
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Kim Farnham
10/8/2016 08:10:18 pm
Karen you've got this! I'm so happy that "Clyde" is with you safe and happy!
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Colleen
10/9/2016 11:02:40 pm
Clyde looks happy!! Love you Karen!
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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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