There has been so much going on over the past few weeks that I haven’t had much time to write an update but at this point no news is good news – things are going really well! I think I’m around day 150 but I haven’t been keeping track. As the days go on and my immune system gets stronger, I don’t have to worry quite as much about germs but a fever would still land me in the hospital so I still use a lot of hand sanitizer. I have been to stores without a mask though! A few weekends ago, our neighbors invited us over for a cookout. We wanted to take something and we decided on cookies. After we made two dozen, which was plenty for our two families, we put the rest of the cookie dough in the fridge to bake later. My parents licked the spoon, which was torture for me to watch since I’m not supposed to eat cookie dough (or anything else with raw eggs). It wouldn’t be good if anyone got sick, but it’d be especially bad for me. The next day, my dad got a spoonful of cookie dough for a snack, and we decided that if the eggs were going to cause a problem, at least one of my parents would be sick already. I grabbed a spoon immediately and it was even better than I remembered. Over the next few days I probably ate more than half of what was left in the bowl, and it was clear when I went to Hopkins…I had gained almost two pounds in two weeks! I told some of my nurses about our strategy and they fully supported it: “sometimes you’ve gotta live a little.” Unfortunately, we ran out of cookie batter and when I went to Hopkins this past Friday I had lost some weight, but it was still a gain from before the cookie batter week so nobody was particularly worried. My counts are pretty good, slowly getting back to normal. They’ve been keeping an eye on my IGG levels. IGG is involved in making antibodies, and my levels have been low but not quite low enough to need a transfusion, which seems to be kind of unusual at this point post-transplant since IGG is one of the last things to recover. I’m a little bit anemic, but my body is pretty used to that since I’ve been anemic for at least a year now. Again, nobody is worried. I asked my doctor a while ago if I could take the Megabus to Philadelphia to visit my friends. She said no because of the terrible flu season but I’ve seen a different doctor since then and asked again this past week now that flu season is over. Nobody is thrilled about the germs on the bus but they decided if I wear my mask and use lots of hand sanitizer, it’s okay. I told them I could wear an extra layer of clothes to take off as soon as I get off the bus and they seemed to like that idea. I ordered bus tickets to Philadelphia as soon as I got home and I’ll be going up next weekend! I’m incredibly excited to see everyone and catch up with friends I haven’t seen since last June. I’ve been trying to regain some of my muscle and stamina so I’ve been walking a lot more, especially since it’s nice out. I went for a walk with one of my friends a few weeks ago, and my sister goes over to the neighbor’s house frequently so I walk down to get her when it’s time to come home. It’s not too far on the street but they have a really long driveway. This past Saturday was The Color Run in Baltimore which benefitted Cool Kids Campaign. I volunteered for the morning race, throwing yellow cornstarch at all the runners. This was my second color run because I missed the November one due to treatment but it was the first for my family. My mom enjoyed the day to herself while the rest of us got colorful. My dad had registered twice, so I walked the second race with my best friend and her family since there were plenty of yellow volunteers. I also got to take pictures of all the other color zones. Speaking of Cool Kids Campaign, my internship is absolutely fantastic! The beltway traffic isn’t fun so I’ve been taking a back way which is so much better! April has been a really busy month for them so I’ve jumped right in. They were the charity partner for The Color Run and they have the rights for the American Girl Fashion Show in Baltimore which is this upcoming weekend (plus the rehearsals were two weekends ago). There were model searches earlier in the year to find girls that look like the dolls. During the show, the girls dress up like the American Girl dolls and walk down the runway, while the emcees tell the audience about their outfit and time period. I read every American Girl book when I was little and this will be my third year helping out at the fashion show. My sister’s a model in one of the four shows and she raised $300 so thanks to everyone who donated! I usually go to Cool Kids three days a week (though I’ve been going to events too) and every day is different, which I absolutely love. I’ve been writing and editing for their newspaper that gets sent to hospitals around the country. On my first day, I went shopping with another volunteer to buy some stuff for teen care packages. Buying toys is unusual because so many people do toy drives, but when people donate, they often forget about the teen crowd…what 16 year old really wants Hungry Hungry Hippos or a Rainbow Loom? I’ve made a lot of care packages for kids across the country and I love driving home knowing that I made a patient (and their siblings) smile. Getting ready for the fashion show has consisted of everything from making nametags to painting cupcake stands to helping to girls get into their costumes at rehearsals. I went to a networking fair at Towson with one of my coworkers and I’ve been taking pictures of every event I can, whether it’s at the Cool Kids learning center or a fundraiser. It’s great to be involved in such a variety of tasks in addition to the typical office tasks like emailing and data entry. Working at a small organization means being involved in a little bit of everything, which has been a blast so far. If there are any runners out there, Cool Kids has two more running events this year if you’re interested! I took my first trip out of the state since transplant to go to Pennsylvania for our family’s Easter dinner. It was great to see everyone, especially since we couldn’t travel for Christmas. The little cousins wanted to hide some eggs, so my brother and I let them hide a bunch in the front yard while we hid eggs in the back. The food was delicious and it was a gorgeous day to spend time outside. This afternoon I got to catch up with one of my best friends from camp who I haven’t seen in a few months. Texting and snapchat are fun but it’s so much better to actually see someone! A lot of my friends and family are getting their bone marrow donor cards so that’s really exciting – I’m so thankful that so many people joined the registry. The other day I was on the phone with one of my best friends and she told me that she might be a bone marrow donor! Some people have multiple matches in the system so they require a little more investigation into who is actually the best match. She didn’t have much information yet, but she just joined the registry in the fall so again I remind you, if you haven’t already, register with Be The Match! You may never be selected, but you could join just in time to save someone’s life. I hope everyone is enjoying the nicer weather! To everyone who started playing 2048 after my last post, you’re welcome! I got to 4096 but I haven’t been able to get any higher. Anyway, to all of my college friends, good luck with finals and I can't wait to see you when you get home!
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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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