Tonight’s update is pretty short because there isn’t too much to update you on plus it’s late and I’m tired. The rest of this week will be really busy though so I won’t be posting again until next week and I didn’t want to leave everyone hanging about my first week of GNKG168. The rest of the week was pretty similar to the first day that I described in my last post. Thankfully, we didn’t have to stay that late again. Each day, they didn’t start defrosting my medicine until I arrived, so I sat in the trauma room waiting. I wore long pants and a jacket every day because the medicine was still cold going into me. It’s crazy how quickly that cools you off! I needed my blood pressure taken every 20 minutes during the hour infusion then every 30 minutes for two hours after. After a week of that, my mom is better at setting up the automatic blood pressure machine than some of the nurses! Since I was in clinic every day, I got to see my other friends who had transplants who only come to clinic once a week. Since we started the trial on Tuesday, the fifth day was Saturday. I had to go to the inpatient side of the floor for a few hours so I saw some of my nurses over there that only work weekends and the family of another transplant patient. Saturday was a late night – we didn’t leave until after 9 because the infusion didn’t start until after 6. Overall, the week was medically uneventful, just really boring to sit around at Hopkins so many days in a row. I’m glad I still feel great but some days it makes it that much harder to be sitting there, when I have the energy to be doing fun things. The GNKG168 study involves two week cycles – 5 days of medicine followed by 9 days off. By the schedule, my treatment should be Tuesday – Saturday from now on but luckily the doctors moved it to be Monday – Friday so I can avoid the inpatient side and keep my weekends free. I have a bone marrow aspiration at the beginning of next week that should give us an idea of how well the drug is working so far. On Wednesday, I had pulmonary function tests so I should get the results of those sometime soon. My tests three months ago looked good so these should be fine but they are standard post-transplant. We are still working out the next stage of treatment with the doctors, the insurance, and the options but I will post more information about that next time when I will hopefully have more information. I managed to go to Cool Kids on Monday and before my infusion Thursday which was nice. I plan to be there as much as possible around my medical schedule because I’m much happier when I stay busy. Sunday was the Cool Kids Running Festival, which my family and a lot of friends came to. Our group won six medals (they were by age group), including gold for my dad and Susie! It was a nice day and the food after the race was delicious. I didn’t even do the 5k because I was volunteering but who doesn’t love watermelon on a hot day? The rest of my weekend included a viewing and funeral for my best friend’s grandfather, which I was thankful to be able to attend (though of course I wish a funeral wasn’t necessary) even with all my time at the hospital on Friday and Saturday. I also got to catch up with friends and eat some delicious strawberry shortcake. Like I said, there really isn’t much going on. We are continuing to play the waiting game so keep sending your positive thoughts and prayers! I hope you all have a great 4th of July!
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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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