I’m trying not to get behind and tomorrow is a big day, so I thought it was time for an update! When I wrote my last post, I was exhausted and thought I needed a blood transfusion. Sure enough, the next day my hemoglobin was down to 8.4. Although some kids can get down to 7, I usually need transfusions around 9 (normal range is 12-15). That Thursday (the 13th) was a long day in clinic while I got two units of blood and cidofovir, an antiviral to help treat the BK virus in my bladder. I’d been peeing blood and clots for more than a week, and even though the clots were interesting shapes – sharks, snakes, and more – I wasn’t enjoying losing that much blood. While I waited for my infusions to finish, multiple doctors stopped by to say hello and some family came to visit since they were also at Hopkins. We also had a really interesting conversation with the clowns about the scary clown trend. During PT, my therapist pulled up my MRI report. There were at least three issues with my knee, and I need to follow up with orthopedics to get more details. It took a while to get an appointment but I do finally have one in the first week of November. One of the issues is something about alignment, which is probably due to muscle weakness so I’m guessing PT can help. Another issue is avascular necrosis, which is a common side effect from high-dose steroids like I’ve had throughout the years. AVN is death of the bone due to a lack of blood supply, so that’s going to require some treatment. My knee has been feeling a lot better as it’s getting stronger in PT but I know the issue is still there. I was pretty sure I was going to have this problem eventually because of the steroids, but I’m hoping it’s not too bad yet and I can do something to keep it from getting worse. I’m anxiously awaiting my orthopedic appointment! At my next appointment on Monday, I peed in a cup so my nurse and doctor could compare the color to last week. It was still fruit punch red with clots, so they didn’t bother sending it to the lab. A few hours later, I went to the bathroom right before we were about to head home. Something felt different, and I realized there hadn’t been any clots. I looked down, and there was no sign of blood – it was almost completely clear because I’m getting 3 liters of fluid a day. I wanted to take a picture because I was so excited but my phone was out in the waiting room. When I told my nurses and doctor, they pretty much all said “that’s interesting…” and told me it was a good sign but not to be surprised if I had more blood later. For the next few days, I braced myself for clots every time but I never had any more visible blood. I got another dose of the antiviral on Thursday, but as long as I don’t have any more symptoms, I don’t think I’ll need any more. I’m still taking tacro, the anti-rejection drug, and we’ve been having trouble finding a good dose. One appointment, my level will be high, so they lower the dose, and then the next visit my level is too low. They increase the dose, and it’s too high, and the cycle continues. The pills only come in 1mg and 0.5mg, so on Tuesday my doctor suggesting switching to liquid after my level was too high on Monday. After I’ll I’ve been through, my doctor was laughing at how much I didn’t want liquid medicine. My mom called multiple pharmacies trying to find one that could make liquid tacro. Finally, one of them said they could get it by 10am, but when we went in the morning, they said it would be there by noon. Hospital time strikes again! It tastes better than a lot of liquids I’ve had, but I really prefer pills. On Thursday, my level was low again, but since I’d just gotten the liquid the day before, they left me on that dose for the weekend. I’m guessing it’s still too low, but we’ll see tomorrow. I think tonight might be my last dose anyway, because my road map says to stop on day 60 if there have been no signs of graft vs. host disease, and we haven’t seen anything yet. I’ve managed to stay pretty busy, though I’m definitely missing being at Drexel. I’ve edited some things for friends and finally read The Immortal Life of Henrietta Lacks, which I highly recommend! Matt came home from school last weekend and it was really nice to see him. We talk a lot but I hadn’t seen him since his cell donation day in August. Susie’s soccer games were within my hour radius both days that weekend so I could actually go watch and enjoy the beautiful weather. We also went for a short, flat walk at a nearby park so I could be outside without hurting my knee. This week, my mom and I went apple picking with one of our free days. It was really hot for October but nice to be outside and 30+ pounds of apples should last us a while! My dad and I have been going to what we call immune suppressed yoga, a small class with a few other friends from the neighborhood, including another transplant patient. Stretching and strengthening is definitely good for me, and I’m getting better at using breathing to relax. Today, we took advantage of the great weather and went for a hike. I love the fall colors, especially when combined with water. I wasn’t sure how my knee would handle a longer, hillier walk but it wasn’t bad at all! Tomorrow is my day +60, which means my first bone marrow biopsy since my transplant. Fingers crossed that it shows 100% Matt and no leukemia! I’m more than halfway through my chain and continuing to enjoy all your messages. Thank you all so much for your love, support and visits! As we quickly approach flu season, please please please get your flu shots!
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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
April 2022
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