It’s been a busy week since we got the unfortunate news from CHOP. I finished up my internship (though I’m continuing remotely as time allows) and did all my last-minute shopping for school. My last weekend of summer included a morning at SkyZone (absolutely exhausting!) and a white water rafting trip complete with cliff jumping. At Drexel, my friends, my new roommates, and my academic advisors have all been great so far and I know that coming back was the right thing to do. It’s been a bit of a distraction from all the medical uncertainty that is plaguing my head. I’ve connected with a few other families who had a similar experiences and it’s been interesting to see what they have to say. My doctors have all been talking and figuring out what trials I might qualify for. A year ago today, I received my modified cells and today my parents met with the team at Hopkins (I called in) to see what they’d recommend next. Their recommended plan is to do a CART trial that attacks the CD22 antigen, and get a second bone marrow transplant as soon as I get into remission. They would potentially do a reduced-intensity prep regimen so that it wouldn’t be quite as toxic, and they actually could use my sister as my donor again. We weren’t expecting this because her bone marrow didn’t give me enough Graft vs Host disease last time to get all the leukemia, but apparently if they use stem cells instead of bone marrow and don’t clean them as well, I would get more of a reaction. There are, of course, lots of potential short and long term side effects of GVHD which as just as terrifying now as they were last time, but the doctors think this is the best curative option. Some of the other trials would probably put me into remission, but they don’t think it would last and the more times my leukemia mutates or returns, the fewer options we have. I don’t like the idea of a transplant and another 6+ months in isolation and I don’t like the numbers, but I am healthier going into it than most second-transplant patients which they say is an advantage. We are going to talk to CHOP as well and see if they have anything different to say. After I shared my diagnosis, I got a ton of support – way more than I ever imagined. Thank you all for keeping me smiling, no matter how easy it would be to cry instead. I’ve gotten some great quotes and inspirational messages which I’ve reread on days like today. My reaction to one post last week stuck out in particular – my friend Amanda posted a picture of us at the beach this summer. My first thought was “wow, I’m glad I had such a great summer before all this!” I’m more thankful than ever for everyone who made this summer unforgettable. I’m thankful I could go camping, tubing, to the beach and Colorado. I’m thankful Governor Hogan invited me and a few other kids from Cool Kids Campaign to go to the Redskins opening game, which was my first NFL game. I’m thankful I got the chance to return to Drexel and to visit my friends at UVA and College Park, and have that little taste of a normal college experience. I’m thankful my cells worked for a year, giving me the opportunity to regain my strength and have all of these memorable experiences. These are the things I need to focus on as we move forward and look for answers instead of asking why me. I’ve really been enjoying Timehop recently because it brings up motivational quotes that I’ve shared or saved over the years. Four years ago, I shared the video for Martina McBride’s song “I’m Gonna Love You Through It” which includes a clip of a woman saying “You know people love you in your life, but you don’t know how much until you get sick.” That is absolutely true, and if love could cure cancer there’s no way I’d ever have to deal with it again. Thanks for your thoughts, prayers, and inspiration – I love you all.
8 Comments
Becky
9/24/2015 07:01:37 am
Karen, As I read through this I am amazed by you and your internal strength. Thank you for the continuous updates and please know if you need anything you got it !! Hope to see you in the near future !! It has been too long !! All my prayers !!
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Karen Shollenberger
10/6/2015 04:08:43 pm
Thanks Becky! I really appreciate it! I'd love to see you next time I'm in the area - it's been way too long!
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Dad
9/24/2015 09:54:45 pm
I love reading your posts -- even when they do make me cry. Your ability to see the positives as you face this struggle continues to inspire me.
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Karen Shollenberger
10/6/2015 04:12:05 pm
I couldn't do it without you. Love you.
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Irma chazotte
9/24/2015 11:11:34 pm
You are inspiring in the way you focus on the positives. A good lesson for us all. 💖
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Karen Shollenberger
10/6/2015 04:09:56 pm
Thank you so much!
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Tricia
9/30/2015 03:54:50 pm
So thankful for you Karen--and especially thankful for our time over the summer! Can't wait to see how you come through this stronger and more resilient. We never realize how strong we are until we're faced with the unexpected--which means my dear Karen--that through this journey you've increased your mental strength and outlook! Thankful for your example!!
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Karen Shollenberger
10/6/2015 04:24:35 pm
Thanks Tricia! I'm so thankful for my wonderful summer before all this :) You're absolutely right - I've learned so much through this journey and I'm sure there's more to come.
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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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