I rarely post updates this close together, but I’m trying not to get behind. Plus, I got some good news right after my last update!
On Wednesday, I went to clinic for my usual appointment – check my labs, Tacro level, etc. As soon as my blood was drawn, I went to PT. My therapist looked at my knee and took some measurements. It’s swollen but not too bad, and she showed us how to wrap it to push the fluid up. I did a few strengthening exercises but we are waiting for my MRI and orthopedic appointment to do much more. By the time I got back up to clinic, most of the results were back. My counts looked pretty good. Since I was discharged two weeks before, I haven’t needed any platelets and only got blood once. My ANC is in the normal range, but my immune system is so new that it isn’t as functional as any of yours and I still need to avoid crowds and sick people. Around day 30, I had blood drawn for a test to see whether or not Matt’s immune system had taken over. Usually, when it takes a while to get these results, it isn’t good news, but I think mine may have been complicated because they had to look for Susie and me. Luckily, it came back 100% Donor 2 (Matt)! I have a bone marrow aspiration and biopsy around day 60, and hopefully my bone marrow shows the same thing at that time! During my past few clinic visits, my blood pressure and heart rate have been high. This isn’t surprising with the Tacro. I started a very low dose of blood pressure medicine and it’s been doing the trick. After getting a liter of fluid in clinic, my heart rate drops, so we upped my fluid goal from 2.1 liters a day to 2.5. Even drinking 2.5 liters a day, my heart rate was still high, so now I get a liter overnight as well. It’s nice to only be connected to the IV pole during the night because it’s a pain to drag around the house. I got a handy app on my phone to keep track of how much I’ve had to drink. It calculated a goal for my weight, but let me adjust it to 2.5 liters. I also put in the time I usually wake up and the time I go to sleep so I can see whether I’m on track throughout the day. Mine is called Water Drink Reminder (in the Play store, but I’m sure there are tons of similar options for iPhones) and I highly recommend it if you’re trying to stay more hydrated. On Wednesday afternoon, one of my friends from camp came to visit which was really nice. While she was here, my doctor called and said my Tacro level was 29.9 so I shouldn’t take any more until it came back down. They reran the test three times and got the same thing, but we were all surprised because I felt fine, unlike when my level was 21 when I was inpatient. That evening, I also started peeing blood and clots. I was very confused when I felt the first clot because it didn’t hurt to pee like it did before. Even though Thursdays are usually free, we had to go back to clinic for another Tacro level. It was down to 13.3 which was much better, but not low enough to start taking more. Nobody was too concerned about the blood, so I guess it’s relatively normal. I was nervous because my hemoglobin dropped from 10.9 Wednesday to 9.9 Thursday. Even though they said we didn’t need to come in on Friday, we went in anyway because I wanted to make sure I didn’t need blood before the weekend. I normally need transfusions around 9 and didn’t want to go to the ER. Everything looked fine and my Tacro level was down to 11.7 so I restarted that Saturday morning. I’m still peeing blood but as long as it doesn’t hurt, it doesn’t bother me too much. Another one of my friends was home this weekend so it was great to see her. On Monday, my clinic appointment was pretty uneventful. My Tacro level was still a bit higher than we want, so I’m down to taking it only once a day. On Tuesday, I woke up with a migraine already bad enough to make me nauseous. I showed up to my 8am MRI with my yellow basin because my Gatorade, Zofran, and Tylenol weren’t staying down and my scopolamine patch wasn’t quite enough either. The MRI room was dim, which was good, but it was loud and freezing. They also made me take off my scopolamine patch but by some miracle I made it through an hour of imaging without puking. My mom put the patch back on as soon as they were finished. When we got home, we reconnected my IV fluids. I spent the afternoon trying everything I could think of to get rid of my headache because I knew food would not be an option until then. By 6pm, I was finally able to keep some Tylenol down and drink some hot chocolate. Throughout the evening, I managed to take most of my pills, one or two at a time, half an hour apart, with hot chocolate. This morning, I woke up feeling much better but I could feel the beginning of another headache so I took my Tylenol and Zofran immediately. I’ve been able to eat and drink today, but I think it's an anemia headache and I’ll get a blood transfusion in clinic tomorrow. I went to the grocery store with my mom this morning (which has been fine in the past few weeks) but less than halfway through the store, I was so exhausted I went back out to the car. I’ll be in clinic tomorrow, hopefully getting blood and an antiviral to help clear up the BK virus that is causing the blood and clots when I pee. It’s hard to tell if it’s getting worse or better on its own because the urinalysis tests for the number of red blood cells keep coming back as too numerous to count…helpful. I also have a PT appointment, and even though I haven’t heard anything about the MRI, I think my therapist should be able to see the report so we can start fixing my knee. I love fall colors and weather and really want to be able to enjoy them! Thanks, as always, for the love and support! Please also send some good thoughts to Juliana, another Cool Kid who has had a really rough week in the PICU. Love you all!
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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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