We got the Christmas tree, and put it up. Karen would have loved it. It took multiple days to get the lights on, all 2200 of them. And that’s how it stayed, until the weekend of Christmas. The only ornaments that were on it were the ones we made while trying to figure out what to make for Karen’s friends, and the beautiful taco ornament that Claudia sent. Eventually, the rest of the ornaments (or at least most of them) got on the tree. The kids each have some ornaments, and it was hard to put Karen’s on. She was supposed to do that! We also made our Christmas cookies that weekend, which was another one of Karen's favorite activities. Last year, Grandma was here, and she took our cookie decorating to new heights. This year, it was just the four of us. I know it's important to keep things as normal as possible, so we had the tree, and the cookies, and the cards, but everything is harder when it all makes you cry.
I was dreading Christmas. We always spend the day with family, and Karen loved her family! It turned out that the week before Christmas was much worse than the actual day. I cried so much that week, but hardly at all on the actual day.
The hospital sent us a card, with papers inside where staff members who knew Karen shared memories. It was very kind and thoughtful, and of course made me cry. We also got a card from the oncology child life staff. These things mean so much to me, to know that somebody, somewhere, was thinking about Karen, and took the time to share that with us. So, if you’re thinking about somebody, take a few minutes and send them a quick hello message. (this is something I need to do more often myself!)
We went on our usual cross-country ski trip recently. I’ve always enjoyed it – the people are great, the location is beautiful, the food is delicious. Karen never missed this trip. During her initial treatment when she was 10, we went (against all recommendations from the doctors!) and had to give her chemo while we were there. When she was at Drexel, she would take the train or the bus to Harrisburg and we would pick her up on our way to Potter County. So of course, I was not looking forward to being there without her. On the positive side, everybody there already knew, so there weren’t any uncomfortable “where’s Karen?” moments. Some of the people who couldn’t attend wanted to see the slide show from the service, so we watched it (and cried!) I took pictures that I thought Karen would have taken, although I’m sure she would have done it better. It wasn’t as bad as I expected – I think Karen’s motto of “high hopes, low expectations” is still working for me. If I think it’s going to be awful, then it usually isn’t.
On that note, I went to PA by myself for a baptism a few weeks ago, and the drive up there was awful. Karen definitely would have joined me, so I really was missing her a lot. I had quite a one-sided conversation with her in the car! It’s not really a good idea to drive while you’re crying.
Last week, I wasn’t feeling well, and spent the whole day sleeping. It made me think of Karen, and how often she felt crappy, and kept going anyway. I can still see her working on her finals at NIH, when the CAR-T fever was starting. The work had to be done (although the teachers would have understood!) and it didn’t matter how bad she felt. I think it had gotten to the point where she felt crappy so frequently that having something to do was a good distraction. Just another reminder of how amazing she was, and how strong.
Steve’s birthday was at the end of January, and it was another one of those “firsts” that was made a little bit easier by very thoughtful friends who invited us for dinner. The actual day was still off a little, but Matt wasn’t there for our brownies and ice cream either, so it wasn’t as bad as it could have been. I spent some of the day in Karen’s room, getting rid of stuff. Some people go through things immediately, but I’m not one of those people. I do a little at a time, and haven’t gotten rid of anything that might have meant even a little to Karen herself. So, it’s even slower than it might be. There has been some progress, though – it turns out Karen had a LOT of paper that I could recycle. There were old magazines, notes from classes, camp schedules, receipts…. But in all of that paper, I came across the Sunsibs logo that they’ve been looking for since last summer, so it was definitely a successful day. I also have lots of journals and notebooks to donate. Matt didn’t enjoy hearing that in 2005, Karen thought that Baltazar was nicer and smarter, when the boys were 8.
The recent issue of Reader’s Digest that showed up here (our subscription lapsed many months ago) had a story about CAR T therapy. It was interesting to read it, but also a bit depressing, because she was SOOO close to success with it. It sure was strange to not see the magazine for months, and then have that be a cover story in the one that appeared. Some people would say that Karen sent it. Maybe she did – a travel magazine came in the same day’s mail!
One of the things that Karen wanted us to do was to make it possible for other patients to travel, like she loved to do. We haven’t gotten that together yet, but in working on it, we’ve discovered a whole bunch of organizations that have the same idea. We are leaning toward “sponsoring” a young adult patient from Hopkins through one of those existing groups, but haven’t made any recent progress toward making that happen. We will get there, eventually.
Here's a selection of Timehop wisdom.
I’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.